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SWIMMING UPSTREAM: MANAGING DISABILITIES
Volume 11, No. 2, Summer 1991
Governors State University, University Park, IL 60466 - 3193
Published under the auspices of the provosts office,
© 1 991 governors state university and helen hughes
ISSN 0736 - 4733
Helen E. Hughes, Editor
Suzanne Oliver, Art Director
Barbara Conant, Library Resources
Nirmala Cano, Managing Editor
Lynne Hostetter, Word Processing
Linda Kuester, Word Processing
Lynn Ann Lindvig, Editorial Consultant
Priscilla Rockwell, Editorial Consultant
Emily Wasiolek, Editorial Consultant
Theresa Rooney, Editorial Assistant
Sally Petrilli, Editorial Consultant
Judy Panko Reis, Guest Editor
Glenda Bailey-Mershon, Illinois NOW/National Organization for Women, Oak Park, IL
Donna Bandstra, Healthgroup International, Sherman Oaks, CA
Margaret Brady, Social Sciences, Homewood, IL
Rev. Ellen Dohner Livingston, Religion, Unitarian Society of Ponoma Valley, CA
Rita Durrant, League of American Pertwomen, Doylestown, PA
Deborah Garretson, Counseling, Muncie, IN
Temmie Gilbert, Theatre/ Media, Governors State University
Linda Grace-Kobas, Journalism, University of Buffalo, NY
Harriet Gross, Sociology/Women 's Studies, Governors State University
Helene N. Guttman, Biological Sciences, Bethesda, MD
Bethe Hagens, Anthropology, Governors State University
Barbara Jenkins, Psychology, Governors State University
Betye Saar, Fine Arts, Hollywood, CA
Sara Shumer, Political Theory, Haverford College, PA
Rev. Lynn Thomas Strauss, Religion,Women's Studies/ Parenting, Oak Park, IL
TABLE OF CONTENTS
3 About our Guest Editor HEH
4 Introduction: Swimming Upstream: Managing Disabilities Judy Panko Reis
5 Acts of Creativity, Acts of Love: Mothering With Disabilities Anne Glaser Brentan
11 How We Won Wheels and Rails Sharon Lamp and Julie Marks-Walberer
14 Three Mothers of Spina Bifida Children Joyce Malo Mikotowicz
16 New Territory: Creativity and Brain Injury Wendy Heller
19 Adaptive Technology and the Release of Human Potential Margaret C. Pfrommer
22 Staying in Step Gloria Hess Schreiber
24 Butterflies Arlene Innmon
25 Artist's Statement Arlene Innmon
26 Dancing Through Fear Holly Hudnut Halliday
29 Touching the Rainbow: The Art of Josee Andrei Barry Birnbaum and Judy Panko Reis
31 "My Osprey" Dave Matteson
32 "Helicopters" Glenda Bailey-Mershon
33 Book Review, Seeing Voices by Oliver Sacks Reviewed by Lynn Dee
35 Bibliography: Women and Disability Theresa Rooney
43 At Last! An OB/GYN Clinic for Women With Special Needs Judy Panko Reis
45 Editor's Column Helen Hughes
printed on recycled paper
The Creative Woman is published three times a year by Governors
State University. We focus on a special topic in each issue, presented
from a feminist perspective. We celebrate the creative achievements of
women in many fields and appeal to inquiring minds. We publish
fiction, poetty, book reviews, articles, photography and original graphic
Cover photograph: Marca Bristo
with daughter Madeline (on lap)
and son, Sammy (on left),
photographer: Brooke Hummer.
ABOUT OUR GUEST EDITOR
JUDY PANKO REIS,
A STORY OF CREATIVE COPING
Judy and I began our joint venture on this special
issue in March 1989 after we met at a Chicago
Women in Publishing event. We hit it off immedi-
ately. Judy's intelligence, warmth and spiritual
strength were shining through and it was clear
that we were embarking on a partnership that
would be educational for us both. We decided to
focus on the various ways people overcome, adapt
to, learn to accept, or transcend the destiny fate
has handed them. Here you see the result of Judy's
two years of writing to, talking with and cajoling
women with various disabilities, who live in
Maine, Haight-Ashbury, or somewhere in-be-
tween, to share their stories with us. You will meet
two blind artists (one blind from birth), a deaf
writer/photographer, a quadriplegic choreogra-
pher, a quadriplegic computer specialist, disabled
Moms describing how they care for their babies,
mothers coping with disabled babies, an HIV
positive mother, and brain injured artists. They are
an astonishing and awe-inspiring array of ex-
amples of human resilience and creative response
to challenge. It is a privilege to present them to
you in these pages.
Judy herself (see Winter/Spring 1991 issue of
TCW, page 37) has come a long way since she was
bludgeoned and left for dead on a beach in Hawaii
eleven years ago.
She is finishing her MSC (Master of Science in
Communication) degree researching electronics
communication networks at Northwestern Uni-
versity, is a consultant at the Rehabilitation Insti-
tute, and does organizational writing and research
for Pierce and Associates, a law firm specializing
in real estate law. Judy recently celebrated her
40th birthday at Buddy Guy's Legends Blues Club
with her husband, Shelly, and a party of sixty
friends. Beyond her remarkable recovery, she has
achieved a full and fulfilling life and has found a
way to use her talents and energies on behalf of
Judy Panko Reis
SWIMMING UPSTREAM: MANAGING DISABILITIES
There is a hint of irony for most of us chronicled in this issue of The Creative Woman on managing
disabilities. Our ability to craft new meaning into the way humans think about routine life activities
derives in part from the creative tension we experience in our everyday swim upstream against the
disabling flow of the status quo.
Our stories are simple. They reveal us to be
neither heroes nor victims, but ordinary women.
We are persons with physical and sensory
limitations, disabled primarily by the attitudinal
and physical barriers thrust upon us by our environment.
Though frequently frustrated in our efforts to overcome barriers,
we continually endeavor to sculpt tools that will enable us to
contribute to the fabric of American life in roles that reflect not
only a diversity of human accomplishments, but also in the
colorful collage of processes we invent to meet them.
The signing of the American with Disabilities Act into law by
President Bush last summer was a stunning example of the
success of our collective attempt to transcend many of these
barriers. A jewel shaped largely by our own design, the ADA adds
to the wealth of American life by offering those of us with
disabilities in mobility, vision, speech, hearing, and learning as
well as persons with AIDS, opportunities to shoulder the risks
and responsibilities inherent in everyday life. By mandating
equal access to private and public accommodations, employment,
telecommunications, and transportation, the ADA enables us to
contribute to the mosaic of an enlightened American culture.
Within these pages you will discover some of the ways in which
women are restructuring current images of how persons
communicate with others, move from one place to another,
nurture children, mold relationships, manage careers, and give
expression to dreams.
You will also explore a link that has fascinated me for years; the
relationship between disability and creativity. As a graduate
student studying brain organization, I was introduced to the idea
that one's ability to tolerate ambiguity could serve as a measure of
creativity. Thus, it seemed to me that disabled persons living in
cryptic worlds charged daily with uncertainties and ambiguities may be compelled to make sense of
this amorphous twilight by transforming it into a splendor of unique creations.
Essentially that is what this excursion upstream is all about - women shaping routine uncertainties
and life situations circumscribed by ambiguity into creative acts that empower them and others to
transcend disabling barriers.
Judith M. Panko Reis
Guest Editor, Summer 1991
Editor's Note: Although the passage of the ADA is a great victory, equal opportunities for the disabled are far from secure
due to the need for regulations delineating specifics of how the Act will actually impact American businesses and
institutions. Needless to say, commercial enterprises and some transit groups will do their best, as they have in the past, to
ensure that our swim continues to be upstream. Come join us in our never-ending quest to create the buoyancy required to
float freely in the currents of the mainstream.
ACTS OF CREATIVITY, ACTS OF
LOVE: MOTHERING WITH
Anne Glaser Brentan
With the rise of the independent living movement
during the 1970's, and the subsequent push for
disability rights, more and more women with
disabilities are choosing to have families. The
challenges they face in becoming parents are
greater than those faced by able-bodied mothers,
but they have found ways to make it possible.
Marca Bristo, Sharon Haines, Judy Panko Reis,
and Clarinda Valentine are four such individuals.
All mothers with acquired mobility limitations
and all with young children, these women share a
host of parenting concerns. Some are issues
specifically related to their disability, but many
are issues common to all women and mothers,
disabled and able-bodied alike.
It is not unusual for a woman to experience
uncertainties at the thought of becoming a mother.
Indeed, the idea of being responsible for someone
from birth to adulthood can be an awesome
prospect. Women with disabilities share an added
dimension to these concerns: how will they care
for a child given their own limitations?
Marca Bristo, who was paralyzed from the chest
down in a diving accident, never considered not
being able to have children just because of her
disability. But once pregnant, she found herself
concerned about a variety of potential problems.
What would she do when her child stood in a
corner beyond the reach of her wheelchair and
taunted "na-na-na boo-boo"? ("And they do that",
Marca says). The President of Access Living, a
non-residential center for Independent Living in
Chicago, Marca was fortunate to have people in
her life with disabilities similar to hers, who had
already dealt with many of the issues she faced.
She had people she could talk to about her
questions and concerns, and role models to look at
and say, "If they can do it, I can do it".
Judy Panko Reis had similar concerns, but unlike
Marca, she had no role models from whom to get
support. A victim of violence, Judy sustained a
head injury eleven years ago causing partial left
sided paralysis of her arm and leg as well as
visual/perceptual deficits. Although ambulatory,
she has difficulties with balance and is unable to
stand for long periods of time. When she married
three years after her injury, the thought of taking
care of a child overwhelmed her. She was still
learning to take care of herself. "I had a
fundamental driving fear about having a child and
that would manifest itself in things like 'I can't
braid hair; I can't tie a shoe; am I ever going to be
able to get out with a baby?' " She tried in vain to
find other mothers with disabilities similar to hers
to talk to, and although she had the support of
family and friends, she remembers feeling very
• urn li
Marca Bristo with daughter Madeline (on lap)
and son Sammy (on left). Photographer: Brooke Hummer
Another area of particular concern shared by
many women with disabilities is how their bodies
will respond to pregnancy, labor and delivery-
Sharon Haines, who was left paralyzed from the
waist down after a car accident in 1984, initially
worried if spending so much time in a wheelchair
would affect the course of her pregnancy. She
found it would not. Judy Panko Reis worried
about maintaining her already fragile balance as
her body grew bigger. Her doctor told her that
since weight gain during pregnancy was a gradual
process, her body and her balance would be able
to adjust accordingly. That is exactly what
happened. On the whole, both women enjoyed a
relatively problem-free pregnancy and no
particular complications during labor or delivery.
Sharon is the mother of a son, Joey, almost two
years old. Judy's son, Lewis, is four years.
Marca Bristo faced a considerably more difficult
situation during the course of both her
pregnancies. Through her own research early in
the first pregnancy, she discovered that the high
level of her spinal cord injury put her at risk for
some serious complications, one of which was
hypereflexia — a condition which can cause a
dangerous elevation in blood pressure. She
arrived at her initial obstetric visit armed with
articles discussing this particular risk and asked
her doctor to read them. 'That started a dialogue.
The doctors were wonderful in that they didn't
come at this as if they knew it all. They used me
as part of the team. They respected the fact that I
knew more about my disability than they did.
And they knew enough about spinal cord injury to
know that no two are the same. So I felt that my
medical treatment was very individualized." One
of the founders of the Independent Living
Movement in Chicago, Marca believes strongly
that if one is knowledgeable about one's own
needs, he/she will be listened to by others. "To
the extent that we empower ourselves, others go
along with us. To the extent that we allow
ourselves to be passive victims, we will be treated
that way." Although labor and delivery were
difficult, she was not deterred from having a
second child two years later. Her son, Sammy is
now almost three and her daughter, Madeline is
The importance of having physicians and other
professionals with expertise in caring for women
with disabilities is one of the reasons The
Rehabilitation Institute of Chicago has opened an
OB-GYN Clinic to service the disabled population.
Reports of problems with some perinatal
professionals and settings are not uncommon.
When Marca's first child was born, the hospital
had no accessible bathrooms. Although
accessibility was not an issue for Judy, who is
ambulatory, she found the instructor of the infant
care classes unsupportive and uncomfortable with
her different needs. In addition, she noted that
even the Occupational Therapist she consulted,
though supportive, was not particularily well
equipped to instruct her on the pressing issues of
caring for a baby with the use of only one arm and
For women with disabilities who want to be
mothers, but cannot bear children — whether
because of the disability itself or because of other
non-disablity related factors — adoption may be an
alternative. However, prevailing misconceptions
about disability make this a sometimes
formidable, though not impossible, challenge.
Clarinda Valentine, a single mother, defied
numerous assumptions when she adopted her first
child seven years ago.
"For a long time," she says, "the assumption was
that if you were disabled, you weren't supposed to
have children. And if you did, then you stayed at
home, and the other spouse became the active
parent in the child's life." Clarinda, who is
employed full-time as the Regional Program
Consultant for The Public Health Service in
Chicago, suffered a severed spinal cord when she
was shot in the back at age fifteen. She uses a
wheelchair, but is able to stand and walk for short
distances with the aid of braces and crutches.
Although she was confident about her ability to
parent, the state authorities with whom she had to
deal in order to complete the adoption, were not.
They found it difficult to accept the fact that a
single woman with a disability could take care of
herself and a child too. It was even harder for
them to accept the fact that such a woman could
also have a full-time job that earned enough to live
independent of public funding. Clarinda persisted
in her efforts to convince them, however, and the
adoption of her son, Shannon, was eventually
approved. Two years later, she fought the system
again and was able to adopt a second child, a
Clarinda Valentine with her adopted children,
son, Shannon and daughter, Islya.
Determining one's need for help in the house after
a baby is born can be an important consideration
for any new mother. It is not always easy,
however, for a woman with a disability to come to
terms with that level of dependency.
As Judy points out, "Part of the independent
living movement includes making decisions about
your independence. We have to make choices
about what we can and will do, where we'll put
our energies. Having someone in to help us is a
way to enable us. We have to look at the help we
need as an enabler."
Because Judy essentially has the use of only one
arm, and because maintaining her balance while
walking or standing is always an issue for her, she
and her husband knew that in-home help would
be essential if they were going to have children.
Judy has found her child care assistants to be
invaluable teachers both for her and for her son,
Lewis. She has hired women who are mothers
themselves, and finds this has made a difference
both in their ability to help her, and in their
sensitivity to her mothering issues.
Marca also chose to have help with child care,
both for the support it would give her, and
because she knew she would be returning to work.
Additionally, issues during her first pregnancy
and immediately following, changed her level of
independence for a period of time and help
became more necessary. "One of the concepts of
independent living is that your level of
independence is not static. Your needs change as
your circumstances or your disability changes.
This was one of the first times that I had to deal
with a changing level of function." A serious
component of in-home child-care assistance,
however, is the current lack of public funding
which puts it out of reach for the low-income
Once the baby comes home, many of the concerns
about handling the tasks of day-to-day
motherhood begin to diminish as mothers
discover ways to adapt to their baby's ever
changing needs. "You learn pretty quickly", Judy
says. "You just kind of end up having a natural
instinct on the spot — of things that you can try
together. You have all these anxieties and there's
no way to figure out too much in advance,
because the child changes so much and you just
develop a feel for the situation. I really think that
Sharon Haines, who uses a wheelchair but has the
full use of her upper body, found taking care of
her son, Joey, much easier than she had thought it
would be. She had been concerned about how
she would lift him without falling forward in her
chair, and how she would bathe and dress him.
Weighing only 5Vi pounds at birth, he was easy
for her to handle. As he got bigger, she found she
readily adapted. When Joey was first born, Sharon
kept him tightly swaddled so he was easier to pick
up. She did all of his changing and dressing on
her lap, and often still does. "Even now that he's
getting so big that his head is starting to hang
over, it's natural for him, since that's the way I've
always done it." She bathes him in the kitchen
sink, an easy height for her to manage since her
apartment in Chicago has been adapted for
Clarinda who, like Sharon, has full upper body
strength, used to change and dress her children,
Sharon Haines and son, Joey.
who are now six and four, on her lap, a bed, or
table. Standard changing tables, she points out,
are too high to be useful to parents in a
wheelchair. She also used the kitchen sink to
bathe her children when they were little. Once
they were old enough to sit up and stand
independently, Clarinda used their natural instinct
to climb to assist her in getting them in and out of
the tub. For the most part, Clarinda has found she
can take care of things on her own. "Sometimes it
takes awhile to figure out how I'm going to do
something, but I eventually get it done."
Marca remembers how the thought of taking care
of an infant when she came home with her first
child was terrifying. But once she hit mothering
head on — learning to change and bathe the baby —
she found she could manage. "Everything took a
lot longer, but I could do those things." She felt
strongly about wanting to nurse both her children
and was glad she did. However, she experienced
considerable physical discomfort related to the
hypereflexia and to muscle strain and fatigue from
holding the baby and says it was, in fact, a relief to
stop. Marca, who has the use of her hands and
arms but has some limitations of upper body
movement and strength, found the easiest way to
lift her children when they were tiny was to slide
her forearms under their bodies with her elbows
supported. Once they were several weeks old,
she would lift them up by the front of their
clothing. She learned this from a friend — a
quadriplegic — who told her about a time he was
home alone with his baby and thought he smelled
smoke. His child was in a one-piece sleeper and
so he was readily able to pick him up with his
teeth and get him out of the house. Ever since,
Marca has always dressed her children in one-
piece suits, or coveralls when she is home alone
with them. She used a snuggly to carry her son
around when he was a baby, but since her
daughter would not tolerate such an arrangement,
Marca carried her in a pillow on her lap. Marca
sometimes uses a power wheelchair which affords
her even greater independence. It has proven to
be a helpful alternative when she is out alone with
Judy also remembers being terrified at the
thought of having to diaper, bathe, and dress her
newborn. But she learned early on that Lewis was
less fragile, and far more flexible than she had
assumed. The ways she handled him were not
harmful, even if they didn't always accommodate
the baby in the traditionally specified manner.
Keeping the baby on a higher surface such as her
bed or his crib made it easier for her to scoop him
up, and she was able to carry him from room to
room indoors. As he got bigger, she picked him up
around the waist. She found diapering most
easily accomplished by keeping a stack of already-
put-together diapers on hand. Then she could slip
them up over Lewis' legs like pants. However,
since diapering, dressing and bathing her son
were such arduous, time consuming tasks for her,
she left these to others as much as possible.
Nursing her baby was an extremely important
time for Judy, providing the opportunity for a
more relaxed intimacy and bonding between
mother and son. Playing with Lewis down on the
floor, a place where Judy is very comfortable and
secure, also gives her the same rewards.
The staff of Through the Looking Glass, a
Berkeley, California agency that focuses on
preventive services, professional training, and
research with the disabled population, has
documented the fact that babies adapt very early
to their physically disabled mothers, and that
often these mothers display a kind of cueing that
facilitates this process. Marca noticed that within
weeks of their birth, both her children began to
tuck their head and legs as she approached to lift
them and that they would stay this way until the
lift was completed. She always approached them
talking, telling them what she was about to do.
The sound of her voice may have become a signal
for their adaptive response to her lift. Sharon
noticed a similar adaptation once her son started
to crawl and it was harder for her to lift him up off
the floor from her wheelchair. He would tighten
or "ball up" his body to help his mother with the
lift. Sharon was then able to rest him on her feet,
and slide his tightened body easily up to her lap.
His adaptation to this lifting, and Sharon's
breaking it down to manageable steps to complete
the process is another example of this parent/
infant collaborative process. As the children get
older, such adaptations take on different forms.
All the mothers noted that their children knew
very early to approach them on their stronger side
if they wanted to be helped or lifted up. Judy has
found that, unlike her friends' children, her son
never puts his arms up towards her to be picked
up when she's standing. Yet he has known from
early on that when his mother is seated, and he
comes to her, she will pick him up and hold him
on her lap. Clarinda and Marca both commented
on their childrens' apparent "extra sense" — at a
very early age — that seemed to dictate generally
more cautious, cooperative behavior when alone
with their mothers as opposed to when someone
else was around. This is particularly evident
when they are out somewhere alone, but is also
true, though to a different degree, when they are
alone at home.
As children become more mobile, issues of safety
become pressing concerns for which every parent
must seek comfortable solutions. For moms with
disabilities, these solutions will necessarily be
influenced by their physical limitations. The most
difficult period of early parenting for Marca was
when her son, Sammy, began to "scoot", but
before he was standing. "When you're in a
wheelchair, you can't grab them [because they're
down too low] and they're moving all over the
place, getting into things. I was worried that I
would lose track of him. He was a very active
little boy." There was a stage before he was as
intellectually developed as he is now, when Marca
did not take him out much on her own due to her
worry that he might take off. Now that she can
depend on him to stay close and listen to her, she
is comfortable taking him out alone anywhere.
Clarinda did take her children out alone even
when their behavior was unpredictable, but only
felt comfortable doing so if she used a child
restraint. "I know that sounds cold and cruel,"
she says, "but I could go anywhere and I felt
comfortable knowing they couldn't go any further
than I allowed them." She used different length
restraints; a long one if they were at the park
versus a shorter one if they were in a Mall or a
crowded area. "I did this until I felt comfortable
knowing that when I called them, they would
Anyone who is a mother will attest to the fact that
children are quick to recognize their mother's
limitations and /or weaknesses, sometimes
capitalizing on them to test the limits of their own
behavior. Mothers in wheelchairs report that it is
not uncommon for their children to lie flat on the
floor, crawl under a table, or find some other
equally inaccessible place just to avoid discipline
or having to do something they don't want to do.
Marca found this behavior particularily evident
during her son's terrible twos. "For parents,
disabled or not, this is a very difficult period. It
requires patience beyond belief. And I think it's
harder with a disability because you really are face
to face with your limitations," she said. Marca
feels it is important for parents with disabilities to
be able to admit — to themselves and to others —
that some of the issues with which they must deal
as a parent are harder than they would be for an
able-bodied mother or father. She feels there's a
"tendency amongst us, as disabled people, to
compensate our disabilities by diminishing the
significance of the difficulty." And it is important,
Marca stresses, that disabled parents give
themselves permission to acknowledge that extra
Judy finds her son, at four, testing the limits of
discipline more and more. She tries to give him
choices, where possible, and finds this often helps
to shape positive behavior, but not always. She
has found it important to have a contained, safe
room where he can go for "time out", so he knows
that he doesn't have it over her physically. With
an outside lock on his door, Judy can, if necessary,
control when he is able to come out. Because she
cannot easily remove him from a given situation if
he is in danger, she does not often take him out
places by herself. She will, on the other hand, go
to friends' houses, where she knows she can get
help with him if she needs it.
At the same time these children are testing the
limits of their own independence, they seem to
possess an understanding of their mothers' special
needs, and are generally accepting and matter of
fact about them. When Sharon is sitting on the
couch and her son wants something somewhere
else in the apartment, he will pat the seat of his
mother's wheelchair and pull her arm towards it,
to get her to come with him. "He knows I don't
walk; he knows this is how I get around." Judy's
son will take his mother's hand when they cross a
street together, not simply because he's been
taught to do it for safety reasons, but also because
he knows that it gives his mother the slight
support she needs to step up and down the curbs
without losing her balance. Marca has found that
when her son wants to do something, and she just
says "no", he fusses and carries on. But if she says
'That's too difficult for Mommy to do", or "that's
too tall", he'll say, "We'll ask Daddy". Clarinda
has always been open and unselfconscious with
her children about issues relating to her disability,
and consequently they are too. "Some of their
friends might say some things to them, and they'll
say, 'My mama's in a chair, she can't do that.' But
it's not an embarrassing thing. And I don't want it
The issue of accessibility, which is important to all
persons with disabilities, seems to loom even
larger when it affects the parents' interaction with
their children. "When it's the natural environment
limiting me," Marca explains, " and there aren't
ready ways to correct it, I'm not angry about it. I
may be a little sad or disappointed. But when it's
the built environment that keeps me from being
the kind of Mom I want to be and sharing in my
kid's development, there's nothing that makes me
more angry." She described taking Sammy to a
children's theatre with her husband, only to find a
flight of stairs that prohibited her from joining
them. The militant side of her wanted to leave.
But the mother side knew how much her son
would enjoy the experience. The mother side
won, and she waited in a nearby coffee shop until
the performance was over. It is clear that despite
efforts over the past twenty years to make our
physical environment more wheelchair accessible ,
there is still a long way to go. There are schools
that remain inaccessible to parents in wheelchairs,
and yet require, as part of their programming, that
parents participate in the classroom at regular
intervals. There are hospitals, theatres,
playgrounds, and even neighborhood drop-in
centers — where parents can go with their children
for much needed companionship and support —
that remain inaccessible.
Accessible transportation is also vitally important
to the disabled, particularily for mothers like Judy,
whose visual/ perceptual difficulties prohibit her
from driving. Although she lives near good fixed
transportation in a Chicago suburb, it is not yet
accessible for the disabled, and Judy continually
struggles with the inadequacies of the local para-
transit. She has found that it often restricts her
ability to get herself to work appointments and to
get her son to school or the doctor. She insists that
she must, therefore, continue to stay vigilant about
all issues concerning accessible mass transit.
What aspect of parenting do these moms find the
most difficult? "There are all these little phases"
Marca says. 'The most frustrating thing for me has
been that the kids have significantly limited my
independence. Other mothers say, 'Oh yeah, me
too'. But it's not the same. We've gotten
accustomed to one level of immobility related to
disability. We've adjusted to that. You throw a
child into the picture and it throws it up for grabs
again. As the developmental phases of the kids
change, your own limits change, and your own
freedoms or lack thereof change. You have to be
constantly fiddling around with new techniques to
maintain your own independence at the same time
that you're dealing with your children's
dependence. So these issues of dependence and
independence can be very frustrating."
Judy confirms this frustration. "I think the biggest
issue for me — always has been and continues to
be — the real inability to get out by myself with a
child that is dependent on me. You really get cut
off from the interpersonal, social bonding with
other mothers. It isolates both the child and the
mother." One of the things that prompted Judy to
move out to the suburbs was the hope that on less
busy streets and flatter terrain, she would be able
to get out more frequently with her son in the
stroller and would thus have the opportunity to
meet other moms in the neighborhood. This
proved to be true. Now, using the stroller to help
control her balance, Judy is able to visit friends
who have children the same age as hers
completely on her own. "It's just such a landmark
Sharon finds that being in a wheelchair imposes
limits on the types of interactions she can have
with her child — now and in the future — and that
is the most difficult limitation with which she has
to deal. Other mothers also struggle with this
issue. Marca tries to cope with these feelings by
mentally ruling out the things she knows she
cannot do with her children, but admits that
"when I'm not prepared for it, that's when it gets
to me. Those times are really devastating. You feel
like you're short-changing your children on the
one hand. On the other hand, you're getting short
changed." With kids, Judy points out, " there
will probably be a whole new set of things we're
just going to have to write off. You don't know
what they're going to be, but they'll be there."
Dealing with issues like these, as well as finding
creative ways to handle the challenges of
parenting are some of the many reasons these
moms point to the need for increased peer
support. The opportunity to talk to other disabled
parents, to share information and find ways to
adapt solutions to common issues to their own
personal needs, is crucial. Agencies around the
country are beginning to incorporate such
parenting networks, and more are sure to follow.
Clarinda has been a volunteer for the National
Spinal Cord Injury Association's Illinois Section.
She counsels women who are considering having
or adopting a child, and women who have had
children before becoming disabled. She wants
these women to know that they can be good
mothers. "It may not always be easy. But it can be
done." She often takes her children, and even a
friend's baby, to demonstrate how to do certain
things at the different stages of a child's
development. When counselling disabled women
who tell her that their hopes of ever mothering are
gone, she tells them, "Oh, no, I have two children
you can practice on!" "That support," Clarinda
says, "makes a world of difference".
Kirschbaum, Megan. "Parents with Physical Disabilities and
Their Babies". In Zero to Three, 1988. 8-15.
Through the Looking Glass, 801 Peralta Avenue, Berkeley,
Anne Glaser Brentan is a speech/language pathologist, free-
lance writer and mother of two sons. She lives in Wilmette,
HOW WE WON WHEELS
Sharon Lamp & Julie Marks-Walberer
This is a true story, a saga of two women and their
struggle for dignity and independence. Initially
they had little in common except that they both
were career women with disabilities. As such,
their careers were threatened due to the fact that
there was a severe lack of public transportation
that was accessible to the disabled, thus they had
to resolve their dilemma or else their jobs would
be in jeopardy. The following is an account of how
these women, with the help of others in similar
predicaments, effected changes in the status-quo.
It all began as a typical day for Julie. After
scurrying around for several hours as she
prepared her family and herself for another
routine day, Julie finally saw her husband off to
work and her kids off to school. At last, she was
ready to leave for her own job. Today she had to
make a side trip to the doctor before she went to
work. She had been having what seemed to be a
minor problem. This problem was to explode into
something that would alter every aspect of her life.
The doctor found that she had a benign brain
tumor which needed immediate removal. As a
result, Julie was left severely disabled.
Initially, she was devastated. Her life seemed
totally destroyed. Everyday activities became
difficult, complicated. Routine tasks such as
changing the sheets, putting the clothes into the
washing machine or climbing stairs became
monumental projects. The challenge of these
previously simple tasks became an impossibility
for her now due to her metamorphosis from a free
person to a prisoner. In time, Julie overcame these
daily challenges and her thoughts turned towards
returning to her career in occupational therapy.
This is where her efforts to resume a normal
lifestyle came to a grinding halt.
No longer able to drive, Julie turned to public
transportation only to find that Chicago's public
transit systems utilized stair-mounted equipment
which she was unable to use. Lift-equipment
vehicles were not even in existence! How could
she put her professional life back in order if she
couldn't even get to work! While searching for an
answer, she met Sharon and the following is an
account of what happened when the two joined
forces to tackle the powers they were up against.
After our first conversation, we recognized that
we were sisters in our struggle. Sharon was a
recent college graduate with a degree in
accounting. She had a slowly progressive
neuromuscular disorder. It was the effect of the
disease on leg muscles which made it difficult and
often impossible to raise her body from one plane
to another. Sharon, just as Julie, had relied upon
Chicagoland's commuter rail service (Metra). But
things were different now - we were different
now. We were like square pegs trying to fit into
It seemed as though the world wasn't ready for us
- Metra wasn't ready for us. They were not
prepared to deal with us. We were disabled
people who had known what it was like to enjoy
their mainline service. This was a service which
boasted of a 98% on-time performance and didn't
have to negotiate with traffic or weather, a service
which could be counted on.
We were not about to accept the totally inadequate
service that this same provider made available to
the disabled public. This so-called "special"
service consisted of vans which, in theory, existed
to provide a comparable means of public
transportation to riders with disabilities. In reality,
it was a total failure. The program was so severely
underfunded that it could only provide 52 round
trips a day to a population of over 200,000 riders
and rides had to be scheduled a day in advance
and were often hours late or never arrived at all.
Unlike the mainline service, we had no service on
Sundays or after 7 p.m. In other words, public
transportation provided to the disabled could not
be relied upon and our lives had to be severely
In an attempt to address these issues, a few of us
fired off a letter to Chicago's transit authorities,
demanding a prompt resolution to this matter. We
signed the letter "T he Concerned Rail Corridor
Users" (CRCU) and thus this became the group's
As word of CRCU and its objectives spread
throughout the disability community, more people
reporting similar problems surfaced. We held our
first official meeting in May of 1988. Attendees
included housewives, an accountant, an engineer,
an occupational therapist, a writer, a corporate
librarian and a student. We all had one thing in
common - the need to use public transportation to
get to jobs, schools, recreation, churches or
families. We were people who were currently
being denied this right for one basic reason - we
The transit authorities' response to CRCU's initial,
and all future communications was that there
wasn't enough money to improve service for
disabled riders. In addition, we were informed, in
no uncertain terms, that public trains didn't have
to provide service to disabled riders as there were
no federal regulations requiring this. We were to
hear these two responses over and over again as
we pursued our cause.
We didn't buy either of
1 their excuses. We
knew that Metra 1 had just spent half
a million dollars ^^ designing an
accessible rail >^T
car. Why would
such a project S$0^!L
be undertaken if
Metra ^r ^Nu&ffk
they had no
service to the
L v disabled
V> (o[ J VlK^.^ We a ^ s0
<S vKp§£^~ were
®H>Sl£ unable to
•jcsj* /8mb\ W ' ' professed
/T '£7**** JU ffljP^s monetary
"v iflfe *s1g$4&^ t\ woes. A
^ r *$L&s(i^z!\ jA\ \ cursor y
^A#feOi/^>$\*4£!jk3 \ \\ rey i ew °f
^^WsJ^/ ID^ ln\ l^TVi / / ' Metra's
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contention that there were no funds available to
improve the service.
Further adding to our skepticism about Metra was
their reference to our service as a social service.
You can imagine how this made us feel - as
though we were being forced into child-like roles
with Metra as our patronizing parent. It was
humiliating to be perceived as a drain to society
rather than the integral elements that we are.
Then came Metra's final blow. They announced
that they were going to bar ambulatory disabled
people from using the van service. Thus, people
who could ambulate with the use of canes,
crutches, walkers and braces were no longer
eligible for Metra's transportation system for the
disabled. However, these people were no more
able to use the mainline service than wheelchair
users. It was ironic that these same people who
had spent so many months in rehabilitation
learning to ambulate without a wheelchair, were
now being shoved back in them - if they wanted to
be eligible for public transportation.
We will never know whether Metra made this
decision out of arrogance or ignorance. In either
case, since their decision affected the majority of
the disabled (80% of the riders) they gave us the
fuel that we needed to mobilize our troops and
CRCU's task became clear. We had to educate and
motivate the disabled public so that they would
recognize their right to public transportation and
be willing to fight for it.
Our strategy was to publicize the discrimination
we were facing. We felt that by raising public
awareness of this issue we could also garner
public support and along with that support,
power. One of the ways we gained publicity was
by launching a series of demonstrations, each one
carefully planned and executed to symbolize our
issues. We utilized the communication skills of
our members to formulate and then distribute
press releases and editorial opinion pieces which
were periodically printed in both of Chicago's
We became vocal participants in both
transportation board meetings and advisory
committees. Armed with a consciousness of our
civil rights and an understanding of the dollars
and cents involved, we were able to expose the
discriminatory attitudes and cost propaganda
perpetrated by Metra. We provided input to the
Chicago study on transportation for the disabled,
which ultimately acknowledged the financial and
operational practicalities of utilizing accessible
equipment on transit services.
We also notified legal authorities of our dilemma.
With the assistance of the Chicago Lawyer's
Committee, members challenged transit agencies
under both the Illinois Human Rights Act and
federal regulations. The latter action was quickly
resolved in an out-of-court settlement which
reinstated the rights of ambulatory disabled people
to use the van service.
In the midst of our various struggles with Metra,
we were uplifted by the efforts of Chicago's
disabled community who had won a victory over
Metra's sister agency the Chicago's public bus
authority, in a decision requiring the
implementation of an accessible bus system within
Chicago. This victory was to have a far reaching
impact that extended beyond our local struggle
with Metra and set a well-timed precedent in the
national movement to help ensure passage of the
Americans with Disabilities Act (ADA).
The ADA is a piece of federal legislation which
protects the rights of people with disabilities.
Incorporated in this bill is the requirement that
public trains be equipped with at least one
accessible car per train within a period of five years
and that all new equipment purchased after that
time be accessible. As active supporters of the
ADA, we were honored to accept invitations to
attend the signing ceremony when the bill became
law on July 26, 1990. It was the passage of the ADA
which finally secured the rights of people with
disabilities to access trains throughout the nation -
Despite all the positive changes we have witnessed
or participated in, our battle is far from over. As we
wait for the ADA's regulations to be written, we
continue to face the daily restrictions imposed on
us by the current system. Tackling these concerns
will require a continuing effort but we have more
ammunition now that we have the full support of
the public and the law on our side!
Just as the caterpillar spins its
cocoon and emerges as a beautiful
butterfly, so did I. As of September
1987 I was exhausted, withdrawn
and inhibited. Then after one and a
half years of working at an independent living center,
coupled with the development of a grass roots
advocacy group, I emerged as a totally changed person.
I had turned exhaustion into enthusiasm, and
inhibition into self-belief. Most of all I had come to
realize that there is power within all people and they
can, with the effort and persistence, develop this facet
of themselves. (Julie)
We engaged in this battle because of our very real
personal needs. We soon realized that in representing
ourselves, we were also representing the needs of
many. It was this realization coupled with the total
experience which empowered us as we evolved from
individuals who were looking at personal factors to
people who were able to envision a much broader
spectrum of issues. (Sharon)
OF SPINA BIFIDA CHILDREN
Joyce Malo Mikotowicz
For some pregnant women, an inner feeling, a
"gut hunch," may tell them that something is not
right. For others, the pregnancy may feel perfectly
normal. But for every woman, there is the moment
of devastation when she finds out that something
is wrong with the fetus.
second ultrasound, four people came into her
room. "At that point I just kept saying, Will
someone please tell me what's wrong?" Mary
remembered. Finally the doctors admitted they
weren't sure and prepped her for an immediate
amniocentesis. The results showed Spina bifida.
Mary and Larry decided against abortion. "One
co-worker told me that she thought I should
terminate the pregnancy," Mary remembered.
"But I knew my baby wouldn't be mentally
handicapped." Although Mary had not attended a
Catholic church for years, she found strength from
the church and from within herself.
"I still couldn't help feeling Why me," admitted
Mary. "I have a sister with Downs Syndrome and
had worked with special needs children and I
couldn't help feeling that I had already put in my
Mary worked for the Easter Seal Association and
wanted to call the Spina Bifida Association, but
every time she dialed the number, she hung up.
When she finally made the contact, the
Association proved invaluable. She and Larry
also took high-risk pregnancy classes, and found
the doctors very supportive.
Larry, Mary, David & Gerard Pritchard
"It was horrible," said Mary Pritchard, when she
found out that her unborn son had Spina bifida.*
"I was ashamed. I thought God was punishing me.
Even though it wasn't logical, I couldn't help
feeling guilty. I thought about every day of my
pregnancy and I wondered if I had done anything
Mary and her husband, Larry, had suffered
through a previous miscarriage, and had difficulty
in conceiving a child. While having routine blood
work done, the doctor noticed something that
indicated the need for further tests. After the
* Spina bifida is a birth defect resulting from
abnormal development of the spinal canal with
varying degrees of neurological impairment; more
serious cases may involve total paralysis of the
lower part of the body with incontinence, and
sometimes an associated anomaly, hydrocephalus,
adds mental retardation to the formidable medical
and social problems facing these babies if they
survive. The causation is unknown. Prenatal
detection is possible in some cases by an
examination of the amniotic fluid (amniocentesis).
Spina bifida is a fairly common congenital anomaly,
occurring once in 300 births. (Ed.)
Manuela Lopez experienced an entirely different
reaction from the medical community. It was her
second pregnancy, and from the beginning she felt
something was wrong. Doctors intimated that she
was paranoid but her fearful feelings continued.
They also refused to give her an ultrasound.
Finally, in her 24th week of pregnancy, she had
the ultrasound. Two weeks later, the Spina bifida
diagnosis was confirmed.
Doctors at the hospital kept insisting that she
would not need a Cesarean section delivery. "I felt
the attitude was, 'You're young, you can have
another kid,'" Manuela remembered angrily. An
intern at the hospital befriended her, and
insinuated that some doctors were interested in
using her vaginal delivery as a test case. Manuela
finally changed hospitals and delivered her
daughter, Luliana, by Cesarean section.
Manuela did not know what to expect, but found
the information and support from the Spina Bifida
Association tremendously helpful. Family, friends,
and church associates also helped her cope with
her newborn daughter.
Mary Aly had an 18 year old son, and felt her
second pregnancy to be a gift. Her pregnancy
Mary and Nura Aly, 1990
appeared normal but in retrospect she remembers
an "inner feeling." "I decided against an amnio,
even though I was 38 years old," she said. "I
already loved this baby."
During her sixth month of pregnancy there was a
period when movement stopped. But an
ultrasound showed everything to be normal. At
eight months the fetus dropped but did not turn.
An ultrasound resulted in a Spina bifida
"Everything happened so quickly, but I was
devastated," Mary said. "I was so scared. I didn't
know what my feelings would be. I started writing
to help me get in touch with my own feelings."
Mary is a news reporter for a Chicago radio
station, and co-workers had been talking about
her pregnancy on the air. "But I couldn't share this
on the air, so I had to pretend that everything was
just fine. It was horrible."
Mary read everything she could find about the
disease and found the medical staff to be caring
and honest. The first thing she remembers hearing
after her daughter's birth was her husband's voice.
"She's so beautiful," he told his wife. They named
their daughter Nura, which means "light" in
Mary proudly says her husband, Nour, was
unbelievably supportive through their experience.
"I stayed at the hospital, but our daughter was
moved to a different hospital for surgery. He
stayed with Nura during the day and fed her my
breast milk. Then he would come and stay with
With prenatal diagnosis, parents can often decide
whether to terminate a pregnancy. Whatever the
choice, this congenital anomaly is never easy to
Joyce Malo-Mikotowicz is the president of the Maine Group,
Inc., which produces educational materials. Her adopted
daughter, Beth will be 5 years old this fall.
Raggedy Ann, 1988, Lynn Dee
CREATIVITY AND BRAIN INJURY
In 1911 the well-known German expressionist
painter Lovis Corinth suffered a massive stroke to
the right side of his brain. His ability to speak was
not affected by the damage, since, as is the case in
most right-handers, language functions were
handled by the left side of his brain. He did show,
however, a profound tendency to ignore
information on the left side of space, a common
deficit after right hemisphere damage, often
referred to as hemineglect. The problem did not
stop him from painting, and over time, he
gradually recovered from hemineglect. But his
style of painting changed dramatically, becoming
bolder, more expressive, and less representational.
Nonetheless, he continued to demonstrate a
unique, creative talent, undiminished by the
trauma to his brain.
The story of Lovis Corinth is not compatible with
the view, often represented in the popular press,
that the right side of the brain is more "creative"
and "artistic" than the left. In fact, many skills go
into the making of a work of art. Studies that have
investigated the work of artists and other
individuals with damage to the brain suggest that
these special skills call upon the cognitive talents
of the left as well as the right hemisphere. The left
hemisphere carries out the execution of fine motor
movements required to produce a work of art in a
right-handed person, whereas the right
hemisphere specializes in understanding complex
spatial relationships. Typically, individuals with
damage to one or the other hemisphere show
different kinds of deficits, depending on the side
Damage to the right hemisphere of the brain
interferes with the ability to represent spatial
relationships accurately, but these individuals are
often able to reconstruct the details. Right-brain-
damage also compromises the ability to distribute
attention evenly and consistently across both sides
of space, and these individuals tend to ignore
information on the left side of space. Often, the left
side of the page is ignored in their drawings, or
objects are depicted with blurred, distorted, or
missing features on the left. This tendency is
particularly obvious in free drawings, but can also
be seen when patients are asked to copy or
reproduce a picture, sometimes even a very simple
one like a flower or a clock. Drawings of right-
brain-damaged patients also tend to be larger than
those of left-brain-damaged patients, and are more
In contrast, damage to the left hemisphere of the
brain interferes with the representation of details,
but the fidelity of the spatial relationships is more
often maintained. Contrary to the popular myth
that the right hemisphere is the most important
part of the brain in producing art, Doreen Kimura
and Robert Faust at The University of Western
Ontario reported that left-brain damage,
particularly to the anterior region, was associated
with greater impairment in spontaneous drawing
than right-brain damage. Left-brain-damaged
patients' drawings were less recognizable, had
fewer lines, and were smaller. The largest
proportion of poor drawings came from patients
with apraxia (difficulty in executing planned,
coordinated motor sequences). These patients
were impaired in almost every aspect of drawing.
These results indicate that the specialized ability
of the left hemisphere to plan and carry out fine
motor movements is as much a part of the creation
of art as the specialized ability of the right
hemisphere to envision the patterns made by
objects in space and time.
Yet there is another dimension to making art,
linked yet separate from cognitive and motor
functions. Art is as much a language of emotion as
it is a collage of skilled brush strokes and superb
spatial relationships. As opposed to the linguistic
medium, which relies on symbols to represent
some referent, art conveys its message directly by
arousing an emotional response in the viewer. A
work of art is considered by Rudolf Arnheim in
his book Toward A Psychology of Art to be
meaningful when it evokes and gives form and
sense to an affective state. In this capacity, art, as
an integral part of ceremony, ritual, and social
interaction, has filled emotional needs in human
culture throughout history.
Art not only carries an emotional message to the
viewer, but it is a vehicle for the emotional
expression of the artist.
As such, the work of skilled artists who have
experienced brain damage often attests to the
creative, adaptive process that lies at the heart of
human perception, action, and expression. They
demonstrate the capacity of the brain to transcend
limitation and to transform loss or change into
valuable and moving visual expression. Though
we might observe a loss of skill or a change of
style in many of these paintings, we cannot help
but recognize an enhanced or altered vision, one
that reveals new territory after familiar paths have
Loring Hughes is a young woman who, like Lovis
Corinth, was also a painter who suffered damage
to the right side of her brain. At age 28, in 1985,
she experienced a series of strokes and a cerebral
hemorrhage that affected as much as one-third of
her right hemisphere. Afterwards, she neglected
the left side of space, the left side of her body was
paralyzed, and spatial relationships became hard
to grasp. A small part of her left hemisphere was
affected, too, enough to cause her some difficulty
carrying out skilled motor movements with her
right hand. Despairing of her career as an artist,
she was convinced she would never paint again.
Loring was lucky. Despite her own fears and
against the opinions of her doctors, her husband
-fc t encouraged her to
put paint to paper
y again. Although it
V was over six
months before she
£ ^ could bring herself
to try, when she
did she discovered
a new spontaneity,
a new freedom to
create. Along with
it came a new
her injury she had
g been considered
mediocre by her
peers, her work
_ now drew interest
Self Portrait, 1981, Loring Hughes and applause
From whence came this new style and expression?
Among other things, Loring's injuries forced her
to plumb the depth of her emotions and share
them, in simple, bold, and forceful lines.
Loring had several major obstacles facing her. A
right-handed person, she had to cope with
difficulties in planning and carrying out the
complex motor movements involved in drawing.
With an image in mind that she wanted to
produce, she sometimes found herself doing
exactly the opposite of what she had intended;
drawing a convex instead of a concave line, for
instance. She had to learn to cope with the
frustration and to have patience with herself.
Although she still has trouble, sometimes, in
carrying out the movement she intended, she has
learned to accept the mistake and to erase and
begin again. She starts with pencil, now, until she
has the image down. She has also had to change
the media she works with; she stopped using oils
since her motor handicaps made it difficult to
clean up and feel comfortable using highly
flammable substances like turpentine. She has also
had to forego using woodcuts, a technique that
requires great motor dexterity and the coordinated
use of both hands.
She has also had to learn to cope with her
tendency to neglect the left half of space. To
counteract that problem, she forces herself,
consciously, to begin at the extreme left of the
canvas. Although it has gradually become more
automatic, she still has to remind herself to think
Perhaps one of the greatest challenges had to do
with her spatial difficulties. When Loring began
again to paint, she
found that she
simply could not
between the lines
producing. At first,
she was not even
aware of the
degree to which
the lines and
came to sense that
wrong, but still
to point it out to her. At first, she struggled
mightily to make her images look "real," like the
things they were meant to represent, a style that
had previously been her trademark. Now,
however, she found she could not get the
perspective right, and the products of her efforts
appeared to her imperfect and lacking. For over
two years, she fought to accept the fact that the
work she was producing would not be the same as
it was before, and to learn not to compare. Over
time, she came to be grateful simply that she could
draw, and she learned to stop asking whether it
was "correct" or not. She became less judgmental
and less self-critical. Now, her work often
surprises her, and sometimes she finds herself
dismayed — but as she has come to see the images
as an expression of her inner reality, she grows
more and more to like them.
In fact, her work has come to remind her of a style
of creative expression that she once admired but
never believed she could achieve. The art of the
Self Portrait, 1987, Loring Hughes
Heads of State and Assassin, Gouache, pen and ink,
1988, Loring Hughes
German expressionists, the pictures of mentally
retarded people, and the lines in cave paintings
had always seemed so free and expressive — but
Loring had been a strict realist. Looking back, she
perceives herself as rigid and restrictive in her
emotional expression, preferring not to share her
feelings at all. After the damage to her brain,
however, two things contributed to a newfound
freedom from inhibition. First, her difficulties with
spatial relationships made it impossible for her to
replicate the world on paper, and this forced her
to accept and explore the world of her own
emotions. As she describes it, she gave up trying
to reproduce things and turned, instead, to her
imagination. Secondly, her brush with death gave
her the impetus to come out of her shell; "like
truth knocking on the door," she felt she had to
Two years ago, Loring was too ashamed to show
her work. A year ago, she found herself getting
comfortable with her new style. To her surprise,
when she did start showing, the feedback from the
artistic community was much more encouraging
than before. Her paintings "deliver an emotional
wallop" according to art critic Eileen Watkins.
What can Loring's story tell us about art, about
creativity, and about the brain? Many aspects of
human function are involved in the creation of a
work of art. Each canvas reveals a perception,
communicates an emotion, and reflects a certain
degree of motoric skill and technical mastery. The
brain is the fundamental substrate of all these
functions, the source from which they all emerge.
Each individual vision is unique, because the brain
is not a photographic plate. Sensory information is
interpreted and the perceptual world is
constructed by an active, creative process that
takes place in the brain and is expressed through
the hand and eye.
Thus, it may be possible to lose certain cognitive
or motor functions that contribute to drawing,
without losing the emotional intensity and
integrity of artistic expression. This phenomenon
may help to explain why, when a group of
neuropsychologists, neurologists, and art critics
gathered together to choose art work for an exhibit
accompanying a symposium in Chicago called
"Art and the Brain," we differed so wildly in our
assessments of the works. The neurologist and
neuropsychologists, and indeed the artist himself
or herself, in many cases, bemoaned the
deterioration in technical skill after brain trauma,
and pointed to the loss of spatial relationships or
precision in motoric execution. In contrast, the art
critics and art therapists were struck by the
moving quality of many of the post-traumatic
works, and pointed to the emotional impact that
makes a work of art truly meaningful.
Thus, there is a complex interaction of factors that
are involved in the generation of a work of art.
The artist's cognitive skills may influence the way
she conceptualizes the spatial representation of the
subject matter; the way this representation is
depicted will in turn be influenced by the artist's
motor skills. Yet the final testimony to creativity is
the extent to which the artist's vision inspires an
emotional and aesthetic response in the viewer — a
skill that is fettered, ultimately, only by the
Dr. Heller is on the faculty of the University of Illinois -
Urbana and conducts an independent practice in clinical
ADAPTIVE TECHNOLOGY AND
THE RELEASE OF HUMAN
Margaret C. Pfrommer
For many years there has been a consensus among
persons with disabilities and those who serve their
needs that independence and employability are
not only important human aims but sound
economic goals. It is generally recognized that the
good use of technical products and services have
enabled them to earn their own livings and /or
reduce assistance. Now with the passage of the
Technology-Related Assistance Act for Individuals
with Disabilities (P.L. 100-407) come two very
important public acknowledgements. First, that
technical aids and services are a vital force in
maximizing the potential of persons with
disabilities, and second, that persons with
disabilities can and do make contributions to our
have had good
that goes far
beyond that of
come from the
Computers and the Handicapped (COPH-2). This
organization was founded in 1981 by persons with
disabilities to assist others with severe
impairments in accessing personal computers and
to educate them as to the advantages of using
computers to improve their opportunities in
education, employment, and independent living.
This was the basis of establishing the Technical
Aids and Assistance for the Disabled (TAAD)
Center. The TAAD Center provides services and
advocacy with an emphasis and perspective in the
selection and application of microcomputers that
is an alternative to the conventional approach of
the rehabilitation network. This alternative
approach is somewhat revolutionary in that the
end users are the ones to make informed decisions
as to which systems or devices best meet their
This element of control is important because many
persons who were seeking to use personal
computers and other technologies in the past were
sadly disappointed to find that the severity of
their disability locked them out of receiving
service. This came about because of a
rehabilitation practice called "defined goals" in
evaluating the appropriateness of a technology.
Limitations were being set under the guise of
being realistic. There are many situations in which
goals cannot be set before consumers get a chance
to try possible solutions to their problems.
The heavy administrative structure which
pervades our society has traditionally de-
emphasized grassroots involvement, which in turn
has resulted in persons with disabilities being
poorly served by unqualified, inexperienced
personnel. A 1982 OTA (Office of Technology
Assessment) report stated that those who have the
authority to prescribe technology may not be the
best persons to do so, yet they are the ones whose
values and goals are respected in arriving at
appropriate applications. This as well as other
constraints identified as obstacles to persons
receiving appropriate technology, are often treated
as inviolable in arriving at the final choice of
The TAAD Center promotes the role of consumers
with disabilities as problem-solvers, not as the
problem. Persons with severe physical, visual, and
learning disabilities are given opportunities to use
the latest computer technology to pursue self-
initiated goals in education, employment, and
independent living. Once these persons have
established their own goals, they are not only
given opportunities for hands-on use of various
computers, adaptive aids, and software, but are
also afforded the means for drawing upon the
experiences of other consumers.
These "other consumers" are themselves persons
with disabilities or family members who while
furthering their goals are gaining valuable
knowledge and experience in the access of
computer technology by their volunteer activities.
These contributions are often discounted by
grantors as being "contributions in kind," or by
counselors as "vocationally oriented" work
experiences, but those who have benefitted from
their volunteer service are truly grateful. This
demonstrates the TAAD Center as a true example
of consumer ownership. To further support and
encourage persons with disabilities to share their
experiences and newly gained knowledge with
others, TAAD will formalize this sharing of
information process by instituting a "peer teacher"
training program. Staff and volunteers will guide
and nurture clients until they are confident and
knowledgeable enough to assume the in-kind role
of "peer teacher."
In keeping with
is important and
essential to the
delivery of TAAD
keeping is in
the number of
unpaid hours of
service that is a
kind and truly
makes the TAAD
The TAAD Center will be involved in a new and
exciting Illinois Institute of Technology (IIT)
model undergraduate program to train
educationally disadvantaged persons with
disabilities for science careers as rehabilitation
technologists. The Center's role will be to act as a
field training site taking advantage of its existing
service delivery model. The undergraduate
program from the perspective of IIT addresses all
of the elements needed to insure successful
outcomes including an environment (TAAD
Center) for hands on experiences.
Because of the severity of their disabilities clients
often require many hours of individual attention
and consultation to access the widely scattered
information about personal computer technology.
However, due to the unfortunate information gaps
about computers and other technologies that exist
in our society, consumers and rehabilitation/
vocational practitioners alike have need for
sources of information that are easy to access. It is
apparent that the practitioners have neither the
time nor the inclination to contact many different
sources and want to plug into one source, press a
button, and have the answers fall into their laps.
Although consumers share the need for a
convenient information source on technology,
their reasons for needing easy access are different
from those of the practitioners. The very nature of
their disabilities makes it a hardship, if not an
impossibility to conduct the required searches.
Although central data banks are to a degree
helpful, they are far from the total solution for
consumers because the information in such a bank
is apt to be limited, and the data bank concept
usually omits the knowledgeable person, not a
manufacture/distributor, who can explain subtle
differences. The TAAD Center, as a charter
member of the Alliance for Technical Access
(ATA) networks with approximately 40 other
centers to share resources and information, and to
problem-solve on behalf of their clients.
TAAD Center staff attend such national
conferences as "Closing The Gap," held each fall
in Minneapolis, Minnesota, to bring back the latest
computer software and hardware adaptations.
In addition, other support services need to be
obtained in order to help clients achieve success.
Services which require advocacy to assist with
transportation, referrals to other appropriate
agencies for assistance, as well as vocational goals
and the acquisition of computer equipment. For
instance, as part of a self-established goal, a person
may plan a demonstration for their vocational
counselor by locating, through a process of
investigation, an appropriate adapted computer
system and then develop their skills in using that
system. This demonstration may prove that these
newly found skills may now make them ready for
job training, a job, or as a potential competitive
The many other services offered by the TAAD
Center include technical problem-solving,
workshops and product demonstrations, and
operates a small loan program. The TAAD Center
makes loans of computers, both Apple and MS
DOS-based, as well as peripherals, adaptive aids,
software, and library materials. Loans of this
equipment have been made to both individuals
and professionals serving persons with
In the early days of the TAAD Center it was
thought that most loans could be short-term two
days to two weeks; however, experience has
proved that it is difficult to loan equipment for
short periods of time. Both individuals with
disabilities and professionals serving their needs
borrow the equipment because they cannot afford
the cost, or cannot acquire formal methods of
financing. Therefore taking the equipment back in
a week or two does not help persons with severe
impairments become proficient in its use and thus
they are not in a position to interest third party
payers in their situation. In the case of the
professionals, such as special education teachers
and therapists, they usually serve an entire
institution of people or an entire school district of
children. When these persons have the use of
adaptive aids or other equipment, they need to try
them out with more than one person. These
tryouts are of a trial and error nature thus
requiring long periods of time.
A situation which illustrated the need for more
long-term loans occurred when a special
education teacher requested the loan of an
expanded keyboard for an Apple He computer.
She thought this adaptive aid might benefit one of
her students, but took the opportunity to try out
the device with several other students as well. The
teacher hoped that her school might purchase
such equipment if the loan proved to be valuable.
The experience was positive and moved the school
district to purchase the aid for their own day- to-
day use with students.
A man with the responsibility of a grant funded
project wanted to borrow a computer system
because his broke down. The repair costs on his
own computer were not affordable at the time so
the need for a replacement was imperative to keep
his project going.
There are many other situations whereby persons
with disabilities have benefitted from TAAD
Center loans of equipment, as well as from the
other services offered on a daily basis free of
Persons with disabilities uniquely encompass all
minority populations and occupy the lowest social
and economic status in our nation. COPH-2 is
acutely aware of the desperate need for this group
to improve their situation and strongly believe
that adaptive computer technology can help them
develop their computer skills and that computer
technology can be one of the instruments of
change to help persons with disabilities improve
their opportunities in education, employment, and
Margaret Pfrommer is a consultant to Northwestern
University School of Medicine. She is quadriplegic, with no
use of her hands or legs, and an expert on adaptive
technology, which enabled her to write this article.
Even though the TAAD Center's pool of
equipment, peripherals, adaptive aids, and library
materials is small, those who have borrowed them
have benefitted in very different ways.
A young woman who is a DORS' client had the
promise that a computer system was on order but
it would take several months before delivery
could be made. Her classes had already been in
session for a couple of weeks, and she became
fearful of lagging behind in her course work. The
TAAD Center loaned her the necessary equipment
until her own computer system was delivered.
A teacher in a Chicago public high school for
students with disabilities borrowed a modem to
use with six individuals. Nine months ago when
he introduced the modem, none of them knew
what it was or what it did. Now they all use
bulletin boards and one student collected over 400
numbers of bulletin boards nationwide with the
intention of starting his own.
STAYING IN STEP
Gloria Hess Schreiber
Ginger Lane remembers world-famous violinist
Itzhak Perlman addressing a group of students.
He was describing how his early reviews all began
the same way — "Slowly, wearing his shiny silver
braces, Mr. Perlman made his way on stage. He
laboriously eased himself into his chair, put down
his crutches, and was handed his violin by the
conductor." He explained that he was lucky if
anyone mentioned his playing, and that it wasn't
until the critics got used to seeing the way he
walked that they started to pay attention to what
he had to say musically.
"You must separate ability from disability," he
said. "It is the ability that I present to the public."
Mr. Perlman's response challenged Ginger to look
at herself not for what she no longer has, but for
what she has to offer. A dancer and choreographer
for over twenty years, Ginger suddenly and
permanently became a wheelchair user six years
ago when she lost her lower and partial upper-
body mobility as a result of breaking her neck in a
"I was a very good skier and I was on an easy
slope," recalled Ginger. "It was early in the
morning and it was icy. I just wasn't paying
attention. I lost control, went off the run, and hit a
Yet, only eleven months later, Ginger was back on
that same mountain, skiing with a sled. "I asked
the ski patrol if we could go down the same run,
and they said, 'No, we don't think so. Why do you
want to go down it?' and I said, 'Because I want to
go whizzing past that tree and say #@$!#@ you
tree, I'm still here'!"
Ginger admits, though, that it's not the same,
mostly because now she must function within new
limitations. "I take what is here today and if I have
frustrations, it's about the fact that I can't do what
I need to do with the sled or the wheelchair... I
don't go down the mountain on my sled and look
at other skiers and say, 'Oh, God, I wish I had my
leg and could ski the way they're skiing,' What I
say is 'Oh, God, I wish I could turn this sled better
and get down the mountain the way I want to get
down it.' I want to do the best with what I have,
which is what I wanted to do when I was
It was about a year after her injury that Ginger
also resumed her activity in theater. She realized
that although she could no longer dance, she
could still choreograph a show — again, working
within a new set of limitations.
"As a dancer/choreographer my body spoke to
me. Intrinsic to my teaching and dances was
demonstrating the look, feel, line that I wanted,
using my own body to show my ideas. Now I
must rely not on body language, but words. I must
give words to the pictures in my head and to the
spiritual or emotional tone I want to evoke. To
touch and create through words alone is hard for
me. It's much easier to show the line of the arm
than to say, 'Arm extended to the side, palm
down, elbow up, curved wrist, not angular.'"
Ginger, however, has dealt with this difficulty by
using assistants who can physically experiment
with her ideas so that she can see if something
looks as good in reality as it does in her
imagination, if there is enough time to execute the
movements, or if the movements simply aren't
physically able to work.
"It's like using a puppet or a mannequin to
experiment with," said Ginger. "You can count 1,
2, 3, 4 and have six moves in your head to those
four beats, but you really don't know if they'll
work until you try them."
Ginger has found that her best assistants are
inherently good dancers. She remembers her first
assistant after the injury, "She would try the
movements and say, 'I can't put my left foot here,
thafs not going to work' or It's easy, no
problem.'" But what made that particular assistant
so valuable to Ginger was that if one of her visions
was too awkward to physically perform, her
assistant could manipulate it so that it would
But not all of Ginger's experiences have worked
out so well. A couple of years later, she was going
through a period of self-doubt and was
questioning her abilities. "I felt hampered not only
by the fact that I didn't have an assistant who
could demonstrate and communicate what I
wanted, but I was really doubting myself,"
remembered Ginger. "I was going through some
personal problems and felt I was losing control of
my life. There were a lot of outside factors that
didn't make this frustrating job any easier. Had I
been in control, I would' ve gone to the producer
and said, Took, this isn't working.' ...It was a
demoralizing experience for me and I didn't do
another show for a year."
With all that behind her now, Ginger is currently
working on a show as an assistant director and
continues to remain involved in theater for three
hours a night, three nights a week, for eight weeks
at a time. However, she contends that the theater
is not a major part of her life at this point.
"I'm spending a lot of my time in an area that has
become increasingly important to me, which is
disability rights and issues of living in this world
for people with disabilities." As the Director of the
Disability Awareness Peer Counseling Center at
Access Living, an independent living center in
Chicago, Ginger manages what she calls, "major
life issues rather than creative /enrichment issues."
She is even considering going back to school for a
master's in social work.
"I don't consider my life as one of merely survival,
I consider it a life of quality. I'm living the kind of
life I want to live because, basically, I'm doing
what I want to do."
Gloria Hess Schreiber is a freelance communications
consultant, a student at Northwestern University, and serves
on the Board of Chicago Women in Publishing.
It was a dream. I was down in the basement of a
church with a group of women. An old wooden
pail filled with water sat amongst us, the wood
gray. Floating on top of the water were butterflies
and moths. They were dead. The other women
were frightened and disgusted by the sight of
them. They wanted to tip the water out and get rid
of them. I saw the deep blue of the water and the
brilliant orange of the Monarchs and the subtle
colors of the moths. I put my hands, one on each
side of the pail of water, and looked deeply into it.
I could see the intricate webbing of the wings,
something that in real life I had never seen, and I
thought how beautiful they are. I believe that for
most people the butterfly represents the transition
from the caterpillar of childhood to the
transformation into the beautiful, free adult we
want to be. For me I see the beauty of an even
deeper transformation - that of death, the death of
my vision. A part of me is like the other women,
frightened and disgusted by the thought of
blindness, but the strongest part of me sees the
beauty in that death and knows where there is
death there is new life.
After the Baptism, scratch board, Arlene Innmon, 1989
Trapped In My Own Eye, clay sculpture,
Arlene Innmon, 1988
Doorway Into Green Birth, oil pastel, Arlene Innmon,
I grew up in Minneapolis, Minnesota. I was
always interested in art. Some of that was because
I couldn't see the blackboard in school so I spent a
lot of time drawing my hand or the back of the kid
in front of me. My family encouraged my art, but
what they wanted was pretty landscapes and still
lifes. I learned rather quickly how to make them
look like a photograph, but it wasn't satisfying. I
graduated from the University of Minnesota in the
early seventies, majoring in Occupational
Therapy. For the next ten years or so I was busy
raising children and working. I did art on rare
occasions, drawing on subjects around me, but I
still painted how I thought things should look. In
1984 a friend encouraged me to send in an
application for an exhibit called "Art of the Eye." I
was accepted and received the encouragement
and confidence I needed to paint the way I
actually saw. In the spring of 1986 I had eye
surgery in which I lost a lot of vision and became
legally blind. For a year it was too frustrating to
do art and I was waiting for the vision to clear
which I was told could happen. A year later I had
more surgery and lost all the vision in one eye and
lost more vision from the remaining eye. At that
time I quit working as an Occupational Therapist
and realized if I wanted to do my art I would have
to do it now. Since that time, aside from eight
months of rehabilitation and raising my two
children, I have devoted my time with a passion to
my art. My vision continues to decrease so the
subjects I use, the techniques I use and the
materials are constantly changing and being
adapted. My art has become more flowing,
spontaneous and an expression of my heart, as I
am unable now to get caught up in small details.
Much of my work expresses the different way I
see things but as I lose more vision, the outside
reality becomes less interesting. Now I do more
work from dreams and inner visions. My dreams
are often very powerful stories. I do lecture slide
shows in which I show the dream image and tell
the story. My future plans are to have a show with
the art piece and an audio tape to go with it. I am
exploring other avenues of creative expression
such as writing, movement and acting.
Thawing Out the Heart of God, pastel, Arlene Innmon, 1990
A Dream - My Father Became the Church,
mixed media, Arlene Innmon, 1988
DANCING THROUGH FEAR
Holly Hudnut Halliday
We dance around in a ring and suppose
But the Secret sits in the middle and knows.
She's alone and she's angry. Not to mention
She'd always had only one goal: When she grew
up, she was going to fall in love, get married,
become a mother, raise children, and have a
But reality tempered Susan Holtz's* dream world
when her husband died of AIDS heterosexually
transmitted. He was not a drug user; he did not
receive tainted blood in a transfusion; he was not
homosexual. He did, however, have some illicit
liaisons during their marriage, one of which may
have left him with AIDS and left his wife a
widowed mother of three children. In addition, he
left Susan HIV-positive. Fortunately, their infant
daughter and the other two children tested
This is her story as she told it to me over time. She
was frank and candid about her fears, her hopes,
her sadnesses. She is a 35-year-old woman whose
children have always been the center of her life,
who stopped working when the first was born.
She has long been concerned with proper diet, and
she and her family had been seeing a holistic
health specialist long before it was in vogue,
avoiding doctors and prescription drugs
Susan does not have AIDS, but she is HIV-positive
- infected with the virus. She needs to tell her
young children (now ages 9, 7, and 5) that she has
a life-threatening disease, but she has not done so
yet, and her husband died over two years ago.
She wishes she could tell the world, but she has
not, for first she must tell her children.
Why doesn't she tell them? Why doesn't she tell
more of her friends than just a select few? Why is
she forced to live a lie, a covert life? Will she be
taken from these three before they grow up, before
a cure is found for AIDS? When will the virus
change to the disease? Such questions parade
through her head.
Susan wants to prepare her children for what
might happen to her, but she hesitates - not
Ballet Slippers with Pearls and Tickets, Lynn Dee, 1990
wanting to frighten them unnecessarily. She
knows she represents safety and she doesn't want
to plant the seeds of fear that they will lose her,
since each of them has separately voiced just such
"what if . . .?" thoughts to her. She does not fear
so much her own death as she does leaving her
children to grow up without either parent.
She treasures the times they have together, for the
children bring her joy. She grieves at the thought
of not being able to see them grow up, and she
fights letting such thoughts cripple her or interfere
with her mothering. She thinks of Elizabeth
Glaser, tireless crusader on behalf of pediatric
AIDS research, and author of In the Absence of
Angels, who has been HIV-positive for nine-and-a-
half years and whose health is still excellent.
Susan vacillates between hope for such longevity
and fear that it is not to be.
The family's reality changed drastically in May of
1987. John had been feeling sick with colds that
never went away, recurrent fevers and bouts with
flu. He had read somewhere about a collapse of
the immune system associated with AIDS and he
half-heartedly went for a blood test. Even though
he had herpes, which doesn't kill, and even
though he had genital blisters that were
contagious, he assured himself that he wasn't a
high-risk candidate for the disease since he didn't
take drugs, was heterosexual, and had never had a
blood transfusion. He really thought allergies and
stress at work (he was an independent financial
analyst) caused him to be run down and
susceptible to illness, and that if he made dietary
changes, all would be well.
It took two months before testing confirmed that
he was HIV-positive. Susan immediately thought
of the rest of the family, so they were all tested.
When she turned out to be HIV-positive as well,
fear set in.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
John died at home. She took care of their secret for
three years, nursing him through his illness. They
all watched him fight the disease, lose strength,
and then slip away in the spring of 1989. He was
41 years old.
Because of their secret, John was denied a proper
exit from this world — not enough farewell visits,
not enough time for grieving, and because of this,
he died ashamed and angry. Because of their
secret, Susan was denied a bereavement group
after his death. She shifted from her total two-
year immersion in helping him to sudden and
complete isolation from other adults. This was by
choice, she hastens to add.
A recent study has shown that support groups
strengthen many cancer victims. Psychological
support not only helps in dealing with the
emotional distress of the illness but may also
strengthen immune systems. And this is good
news for AIDS patients and those who, like Susan,
are HIV-positive. From this healing web of
caregivers — including family members and the
friends who share the secret — Susan now gains
great emotional sustenance. With their help and
their active listening, Susan regains control over
this world of uncertainty in which she lives: when
she starts to lose it, she knows who to call.
Susan has recently been attending a church that is
helping her. Its philosophy of encouragement is
uplifting. Sin is not talked about there; members
love themselves and others. They forgive one
another and learn to forgive themselves. The
emphasis is on how to improve their lives, and she
has seen progress in her own life, and that feels
good. She doesn't want to become stuck in anger
or fear, as she saw John become. As Elizabeth
Glaser has written: 'There is no map for life;
unfair things happen. The challenge is what you
do with these things."
Susan's and John's life together had initially been
all that a romance should be: great magnetic pull,
lots of passion. They were together for seven
years before they married. In the seventh year,
Susan found out that John had not been faithful,
but he convinced her of his contrition and very
soon thereafter they got married. She thought she
could deal with his infidelity, but a large part of
her could never trust him totally.
He was a wonderful dad — very loving, nurturing,
and caring. He was with the kids a great deal.
She and John enjoyed being parents together, but
they had trouble being husband and wife. They
didn't communicate well and they even talked
occasionally about separation. As angry as Susan
was, she wanted to stay together for the children,
hoping that maybe the illness would at last bring
them together in their marriage.
Susan now sits in the rocker with the winter sun
streaming in upon her, and she contemplates her
life. The invisibility of her condition makes it
hard. She looks fine, she feels fine. No one would
guess anything's wrong with her. But she
wonders at her every symptom: Is a lingering cold
a first clue? Is her fatigue simply normal
exhaustion or a sign that the illness is moving in
on her? She is asymptomatic, but how long will
Reports from the medical field are encouraging.
In the January 15, 1991 papers she read that an
AIDS vaccine has proven safe for humans; the
vaccine seemed to prompt a double immune
response in the volunteers, for not only did they
develop antibodies to the AIDS virus, but they
also produced immune system "killer T-cells"
(those are the cells of the immune system that are
the primary defense against viral infections)
specific to the AIDS virus. And a few weeks later
she read of joint research between Baxter
Healthcare Corporation and Argonne National
Laboratory aimed at killing the AIDS virus. This
is the first time a national laboratory has entered
into research with a private, for-profit firm under
a new federal law designed to encourage just such
cooperation. There may be hope.
With her eyes closed there in the rocker, her
thoughts drift toward death. But the background
music of Susan and John's favorite song, "Don't
Give Up," drifts across the room sending her a
different message. She must focus on the gift of
having time to prepare for leaving. She can
decide, based on conversations she had with John,
where their children will live after she dies. She
can write letters for the children to read — much as
she read letters that her father had left for her, for
he died when she was two years old. She can
make videotapes for the children to see later. She
can keep taking photographs and getting family
Susan can keep living into the moment, reveling in
it and in her time with the children. She wants
resolution, but there is none. She must take care
of herself as she did each time she was pregnant.
At that time she had learned to wait, but there was
activity in her passivity. The receptivity of that
passivity is what she wants to recapture now.
Susan was reading The Wizard of Oz to five-year-
old Anne the other day. She thought how like the
Cowardly Lion she was: She really didn't know
her own strength until she was tested. But she has
proven herself strong. She has lived through her
husband's illness and death. The children are
happy. She is responding to AZT.
Franklin Roosevelt had it right when he said the
only thing to fear was fear itself. Susan knows
that fear will be her greatest debilitator. She must
stay strong for herself and for the children. She
must find pockets of quietude to renew her energy
in order to be there for them.
Susan can only hope for a new understanding
about PWAs (People With AIDS). AIDS victims
are contagious only when fluids are exchanged —
and that does not occur in friendship, over a cup
of tea, or when our children play with Susan's.
AIDS cannot be spread by touching, or hugging,
or kissing, or from a tear, or from any form of
bodily contact other than sexual intimacy. Nor
can it be spread by sharing towels, food, or eating
utensils with PWAs.
The hidden costs of the disease are many. Lost
friends. Lost family members. Lost jobs. Lost
insurance coverage. A lack of knowledge and the
fear of contagion from casual contact. It was
John's awareness of society's potential cruelty,
based on ignorance, that kept him from being
Keeping the secret leads to emotional
schizophrenia: Susan is one thing to her
children — strong, confident, loving — and another
to her inner self — alone, grieving, fearful.
Toward the end of John's life, he told his story to a
reporter from the local newspaper. Susan was
glad that he did this before he died, because it
offered a catharsis for him, a kind of closure. After
that he seemed relieved and more relaxed.
Yet the reporter who told John's story entitled it
"Family on Death Row," a title that catches the
essence of society's misconception about AIDS,
since death row is reserved for the most hardened
of criminals, for those who have committed the
most heinous of crimes. To use that metaphor is
to imply these connections. An article with this
sensationalist title perpetuates the myth that all
AIDS sufferers are wrongdoers, that they need to
be punished. It reinforces the negative attributes
that society has already placed upon those with
No, if AIDS is the first epidemic, AFRAIDS is the
second. AIDS victims and HrV-positive sufferers
are forced to live a lie.
Susan has a friend who calls her "The Dancer," for
she loves to dance. Barn, jazz, ballet, ballroom,
folk — you name it, she loves it. She and the kids
frequently just turn the music up and dance away.
When John was dying, she found release in her
once-a-week dance class. She would throw herself
around in rhythmical movement, work out her
pent-up emotions, and become filled with joy.
And because she knows how to dance alone, she
doesn't need a partner. She wants to flow and
glide through this period with the grace and the
joy of the dance, and she knows that if she is
fearful about the next step, she'll be sure to miss it.
"You do what you have to do. This is not a hero
thing," she says. She wishes she had someone
loving her, but she can dance on her own — a
metaphor for her life.
The greater the love, the more false to its
Not to be born is the best for man;
After the kiss comes the impulse to throttle,
Break the embraces, dance while you can.
Susan has lived with the impulse to throttle and
has gradually overcome that anger; she has broken
the embrace and will dance while she can.
To the reader living with HIV, know what Susan
has learned; that there are ways to strengthen the
immune system through proper diet, moderate
exercise, stress management, positive mental
attitude as well as through taking AZT regularly
(or DDI for those who have toxic reactions to
AZT). And know too that early medical
intervention puts time on your side. For the
reader with further questions, call 1-800-HIV-
INFO, the local department of health, or the
National AIDS Hotline, toll-free, 1-800-342-2437.
f not her true name.
Holly Hudnut Halliday is a writer and editor for the
University of Chicago Press. She recently completed her
graduate studies at Northwestern University.
TOUCHING THE RAINBOW:
THE ART OF JOSEE ANDREI
Barry Birnbaum and Judy Panko Reis
Josee Andrei is blind. She has been since birth.
Born in Corsica, raised in Belgium, a psychologist,
mother of three, poet, hypnotist, ceramist, comedi-
enne, and painter, no one captures the essence of a
renaissance woman better than she.
In 1985, a female artist who taught blind persons
to paint was told about Josee Andrei, who was
described as a blind woman who coordinated her
wardrobe colors splendidly. Sensing this talent
could lend itself to painting, the teacher brought
the subject up to Josee. Her response, as always,
was, "I'll try about anything."
From that beginning, it's amazing to see how tight
her compositions, structures, and forms are given
they are products of a self -created technique, and
invented by a woman who has never visually
Expanding enormously on the processes taught to
her by her instructor, Andrei gradually developed
her own method of painting.
Working on canvases ranging in size from 36 x 48
to 48 x 60, a colorful acrylic base is painted on the
canvas. Then she "draws" with masking tape.
Each shape to be painted (i.e. a house, stairs, a
person) is basically outlined with various widths
and lengths of masking tape. Using its raised edge
as a tactile guide, she glides from image to image.
Eventually everything will be laid out on the
canvas as masked edges. Then comes the joy of
Tubes of acrylic paint are labeled in braille, help-
ing her to differentiate those colors she has
learned to be warm and cool. Andrei's deft touch
and her self-proclaimed ability to tap into the
collective pool of artistic knowledge must have
passed on to her through the genetic memory of
her Mediterranean origins and given birth to her
rainbow palette. Sponges, brushes, fingers all
come into play as tools. She has the option of
painting between the masking taped edges, or
painting around the edges. Finished works sparkle
and dazzle, frequently eliciting a common reaction
from viewers, "It's so beautiful I feel like touching
These days, as in the past, Andrei finds inspira-
tions for her paintings in her daily experiences - a
mood, a fragrance, music, or a walk in the woods
Working from her two bedroom living space in
the Haight-Ashbury district of San Francisco, she
uses her large kitchen as the painting studio, and
one bedroom as a drafting room. The whole living
space could be considered an art studio since her
canvases and, award winning ceramics, and
sculptures are strewn about everywhere.
Josee Andrei would like to teach her techniques in
schools for the blind but in America, she feels that
such schools regard art as rather insignificant. By
contrast, she notes that in Europe, where she was
raised, the teaching of the arts to the disabled is
welcomed and encouraged.
Andrei has shown her work in a myriad of shows,
and has sold. She often supplements her income
from the arts by relying on her training as a hyp-
notist, treating clients through self-hypnosis to
break various personal habits. Professional experi-
ence as a Gestalt psychologist in Belgium assists
her in helping clients overcome their problems.
Complementing these talents are literary accom-
plishments. Drawing upon her studies at the
Sorbonne in psychology and modern literature she
has published poetry, children's stories and film
Sister of the Night,
scripts in her native French language.
In 1988, Andrei expressed yet another facet of her
ever-evolving character by publishing Hidden
Waters, her first English-language book of poetry,
replete with original artwork. Currently she is
working on publishing her second book of poetry.
Willing to "try anything," there seem to be few
barriers Josee Andrei can't handle with imagina-
tion and finesse.
Editor's note: Josee Andrei can be contacted by writing Olivia
Platford, Eye to Eye Communications, 1166 Haight Street #11,
San Francisco, California 941 1 7.
Available: DISTINGUISHED PEOPLE WITH DISABILITIES, a poster series
Ludwig Van Beethoven
Thomas A. Edison
Franklin D. Roosevelt
Write to Disabled Students Services Program, San Jose State University,
1 Washington Square, San Jose, CA 95192-0168 or call 408/924-6000.
Good News for
People of All Ages
Statewide Library Information
For Caregivers of the Disabled
(Project SLICD) Is Now
Available In Every Illinois
Portraits of Women
A Videotape by Julie Harrison
and Harilyn Rousso
1989, 58 min., color video
Captioned: Rental $75 Sale $295
Designed to provide positive, realistic
pictures of the lives of women with
disabilities. Positive images focus on
three strong and articulate women.
It's cloudy outside.
Inside my sky is clear.
A few tiny cumulus clouds appear
to the west
But my spirit is alive and can blow them away-
I soar as on wings of eagles
Swoop down, land on limb, fold my wings,
Snuggle fledglings in my breast.
My talons are sharp.
I gaze down from the nest, target a fish.
Eyes, wing, and talon become one.
Tree to water to tree in one
I bring home to the nest that which I desire
for those I love.
Only the sadness the fish must die
darkens the cumulus clouds.
The boy running ahead
the locust seed,
down to earth .
with her cane
"That is me
with the pain
Crashing to earth
Trying to whirl
Still in the air
Luck and a higher hand
Choosing where I land,"
Sending feathery seed
after feathery seed
Whirling and crashing
happy in the
motion and contest
with air and pull.
The woman smiles
on her unaware
Ways of destruction.
Until she sees
that the boy
is setting motion
at the canopy
of overriding trees
She wonders which
have been allowed to stay
where their heart first fell
were pulling groaning
their settled place,
Plan and pattern
These parted the air
until she found herself
behind the boy
at their door
that she, at least,
and not crashing
Through any plane.
BOOK REV IE W
THE WORLD OF THE DEAF:
A NEUROLOGIST'S INSIGHTS
Seeing Voices by Oliver Sacks,
University of California Press, Berkeley, CA
Reviewed by Lynn Dee
Oliver W. Sacks, a well known British neurologist
and author, likes to take the reader on different
journeys through his clinical tales. He places the
human subject — the affected struggling human —
at the center and deepens the case history into a
narrative or tale. This makes for very interesting,
educational reading. Seeing Voices follows Sacks's
earlier successful publications. He takes the reader
on an unusual journey through the world of the
deaf. Sacks did not have any clinical experience
with the Deaf, but after meeting deaf friends and
working with specific deaf patients, he began
learning sign language. His other writings include
clinical tales covering autism, Tourette's
Syndrome and epilepsy — to name but a few
diseases — that were gathered together in his best
seller, The Man Who Mistook His Wife for a Hat.
Other Sacks's books include Migraine (a ground
breaking study of headaches), and Awakenings (an
extraordinary account of how the newly
discovered drug, L-Dopa, could temporarily
restore consciousness to a group of people who
fell into zombie-like states during the great
encephalitis epidemic of the 1920's). This latter
book was called a masterpiece by the poet W. H.
Auden, and has recently been made into a
powerful and effective movie.
Another predecessor to Seeing Voices is Sacks's A
Leg to Stand On - his firsthand experience as a
patient. This book describes his accident during a
walking tour in a Norwegian mountain that
resulted in a severely fractured leg with ruptured
main tendon - and the memoir of his near death
and long convalescence - which led him to create
his view of "existential neurology" - a neurology
of self in dissolution and creation.
Which brings us to Seeing Voices - how Sacks views
the Deaf as a unique window on "what is
distinctly human in us - our capacity for language,
for thought, for communication and culture." It
seems that when one sense is absent, other senses
emerge creatively to spark beyond ordinary levels
or compensate for the
absent, dissolved sense.
This position fits his
viewpoint. The hearing
sense or ability
"dissolves" or ebbs away
and other potential
senses "wave" over. For
example, he contends
that the deaf develop
more acute sight
In the preface of Seeing Voices, Sacks clarifies his
position as an outsider of the field of the Deaf with
no axe to grind. He includes numerous, lengthy
footnotes as "mental or imaginative excursions,"
also written in Sacks's fine flowing and incisive
style, to be read or skipped, as the reader chooses.
Part I of this three part book covers the history of
the Deaf - from ignorance to flickering periods of
illumination. In 1776, Abbe de l'Eppe wrote a
proposal for teaching the deaf, using a
combination of Sign developed by mute tramps
from the streets of Paris and French grammar. This
resulted in successfully teaching his deaf students
to read and write. His novel approach made him
known as the "Copernicus" of deaf education.
One of his students, Pierre Desloges, wrote the
first book ever published by a deaf person in
which the frightening world of being without a
language is described. Language helped him
comprehend abstract ideas and pursue complex
De l'Eppe's methods spread throughout Europe
and America with schools primarily taught by
deaf teachers. But later Victorian pressures of
conformity spread into the spheres of the deaf,
with intolerance of the minority. Further
complications ensued after Laurent Gere, the last
great supporter of Sign, passed away in 1870. The
final clampdown came ten years later when the
International Congress of Education of the Deaf
voted to prohibit the use and teaching of Sign in
schools. From that time, with the prevalence of
oralism (speech reading and auditor)' training,
without Signs), the educational achievements of
the Deaf plummeted. Sacks comments that it took
two generations of Sign to establish a rich culture/
language for the deaf and just that same period of
time to uproot it.
Sacks's visit to Martha's Vineyard and its older
residents, survivors of an earlier community all of
whom - both deaf and hearing - signed, convinced
him that sign, the visual world of gestures, is the
fundamental language of the brain. He is also of
the opinion that to be born deaf is much more
serious than to be born blind. He points out that
the prelingually deaf, unable to hear their parents,
are at risk of failing to develop language unless
early and effective measures are taken.
In the second part of the book, Sacks constructs his
personal view of deafness based on his extensive
knowledge of neuropsychology, neurophysiology
and linguistics. As is well known, for the majority
of us the left hemisphere of the brain controls
language while the right hemisphere handles
visual and spatial duties as well as novel
experiences. However, in working with deaf
stroke victims, researchers have learned a startling
new fact: that Sign is controlled by the left
hemisphere like any language, even though it is
visually and spatially oriented. Since humans are
neurologically ready to acquire language during
their first three years of life, any delay of language
acquisition can severely affect their potential for
symbolic thought, i.e., they apply "chair" only to
the chair in view, not to the abstract or generic
idea of chair. They also have difficulty
understanding questions and carrying on a
lengthy dialogue. When deaf persons learn to
Sign, visual skills are developed that help them
discern subtle facial expressions and spatial
perceptions. Through hand dexterity, signing also
gives them a keener sense of movement. The test
of copying Chinese pseudo-characters was given
to a group of deaf Chinese children and hearing
Chinese children ; the former did far better, which
demonstrated that deaf children have more astute
visual intelligence than their hearing
contemporaries. Dr. Sacks maintains that Sign
Language is fully formalized and is replete with
grammar. However, Signing has been underrated
as a means of communication because hand shape,
movement and spatial positions are poorly
translated into the written word.
In the third part of the book we learn about
Gallaudet University - the only university in the
United States for deaf students - and the exciting,
ground breaking events of March 9-14, 1988, when
the students organized the demonstrations which
were effective in bringing Gallaudet University its
first deaf president.
Seeing Voices is a lovely patchwork quilt of
interesting facts and speculations on the world of
the deaf. The extensive footnotes provide
additional scientific background for the reader
with more than a casual interest. Sacks's highly
admired lucid style and his probing and humane
intellect shine through.
The world of the deaf is much misunderstood and
unappreciated. Sacks dispels many of the
prejudices of the hearing world. In addition, this
book is an exciting contribution to our
understanding of the neuropsychology of the deaf,
especially in regard to laterality (hemisphere
dominance) in brain function.
This review has been adapted from a previously published
review in the newsletter of American Hearing Research
Foundation, permission for reprint granted.
From a purely individual human/design view point, Lynn
Dee approaches her photo or illustrative subjects with a
special interest in their natural or machine made attributes -
to give the viewer renewed perception. A major "cross-
current in the upstream of creativity," to cope with, is her
congenital profound hearing loss. Lynn's undergraduate
studies at St. Xavier College included a travel-study program
in Europe. A Masters of Fine Arts degree from the School of
the Art Institute of Chicago followed.
Photo of Lynn Dee shows her with Nora, her hearing-ear cat.
Her photographs appear on pages 15, 26 and the cover.
WOMEN AND DISABILITY
Albrecht, Gary L. The Sociology Of Physical Disability And Rehabilitation. Pittsburgh, University of Pittsburgh Press.
Written by behavorial scientists researching the sociology of physical disability and rehabilitation.
Barrett, Carolann. "A Network For Disabled Women." Woman of Power. Fall, 1990. p. 31.
Interviews Marsha Saxton, author of With Wings: An Anthology of Literature by and about Women with
Becker, Elle Friedman. Female sexuality Following Spinal Cord Injury. Bloomington, II., Cheever Publishing, Inc. 1978.
Discusses the sexual experiences of spinal-cord-injured-females.
Biscoe, Sandra Duchnak. Functional Capacity Limitations And Disability. Washington D.C., Washington SSA Publica-
Reports on disabilities in the United States using data collected from the 1972 Social Security Administration
Bloch, Erich A. A Directory Of Federal R&D Agencies' Science And Engineering Programs For Women, Minorities, and
Physically Handicapped Persons. Washington D.C., National Science Foundation. 1985.
Provides information about programs designed to attract women, minorities, and the physically handicapped into
science and engineering careers.
Bo we, Frank. Comeback. New York, Harper and Row, 1981.
Profiles six handicapped people and a therapist.
Brooks, Nancy A. Women and Disability: The Double Handicap. New Brunswick, New Jersey, Transaction Books, 1985.
Explores issues concerning women with disabilities who suffer the double effect of sex discriminarion
and physical handicap.
Campling, Jo. Better Lives For Disabled Women. Great Britain. Virago Limited. 1979.
Written with the disabled woman, living at home, in mind, this book covers many problems faced in daily living.
Cheever, Raymond C. Bowel Management Programs. Bloomington, II., Accent Special Publications, 1975.
Gives ideas and techniques for bowel management in social situations.
Cornelius, Debra; Makas, Elaine; and Chipouras, Sophia. Sexuality and Disability. Regional Rehabilitation Research
Institute on Attitudinal, Legal, and Leisure Barriers. Washington D.C., George Washington University, 1979.
Includes information about specific disabilities and sex education, programs, functioning, attitudes, counseling, and
Eckhardt, Elizabeth May; Waggoner, Neva R.; Buettke, Eleanor M.; Schwab, Lois O.; Trotter, Virginia Y. Homemakcr
Rehabilitation. Washington D.C., Women's Committee. The President's Committee On Employment Of The Handi-
capped. August, 1972.
Covers child care, clothing, home management, and homemaking devices for disabled homemakers.
Eneby, Gunnel. Let There Be Love. Sex and the Handicapped. New York, Taplinger Publishing Company. 1975.
Explains the need for sex and love for those living in an institution.
Fine, Michelle and Asch, Adriene. Women with Disabilities. Essays In Psychology, Culture, and Politics. Philadelphia,
Temple University Press. 1988.
Takes a look at women's disability rights from a feminist point of view.
Kendrick, Deborah. "Just Being Mom: I Just Do What All Mothers Do." Chicago Parent. ( West/ South ) Dec. 1990.
Tells how blind mom takes care of her family.
Landis, Carney. Personality and Sexuality Of The Physically Handicapped Woman. New York, Arrow Press. 1980.
Focused on non-institutionalized women with such physical handicaps as chronic heart disease, spastic
paralysis, epilepsy, and orthopedic disabilities.
Loomer, Alice. Famous Flaws. New York, Macmillian Publishers, 1976.
Talks about famous people who have flaws and physical handicaps.
Marinelli, Robert P. and Dellorto, Arthur, E. The Psychological and Social Impact of Physical Disability. New York,
Springer Publishing Company, 1977.
Teaches reader about the effects of the rehabilitation process.
Matthews, Gwyveth Ferguson. Voices From The Shadows. Women with Disabilities Speak Out. Toronto, Women's Educa-
tional Press. 1983.
Includes interviews with disabled women and an autobiography of experiences of a disabled woman.
National Innovations Centre Research Team. Disabled Students In Higher Education. London, National Innovations
Deals with Britain's disabled full-time degree seeking and higher degree seeking students at universities.
Nordquist, Inger. Life Together - The Situation Of The Handicapped. Stockholm, Bromma Swedish Central Committee for
Notes parent-handicapped child relationships, sex education for handicapped pupils, and sexual information for
O'Toole, Corbett J.; Weeks, Cece. What Happens After School? A Study of Disabled Women And Education. San Francisco,
U.S.Department Of Health, Education, and Welfare. 1978.
Outlines research results to be used by disabled female students to help them choose career paths.
Sacks, Oliver. A Leg To Stand On. New York, Summit Books, 1984.
Examines how author became temporarily disabled when he broke a leg mountain climbing.
Savitz, Harriet May. Consider Understanding Disability As A Way Of Life. Plymouth Meeting, Pa., Sister Kenny Institute,
Discusses employment, daily living, and activities for the physically handicapped.
Saxton, Marsha. With Wings: An Anthology of Literature By And About Women With Disabilities. New York, Feminist
Press at The City University of New York. 1987.
Expresses feelings of disabled women through creative writing.
Splaver, Sarah. Your Handicap - Don't Let It Handicap You. New York, J. Meisser, 1967.
Gives young, disabled persons understanding the special difficulties certain handicaps present.
Stone, Deborah A. The Disabled State. Philadelphia, Temple University Press, 1984.
Takes the view that disability is a socially created category that determines the legal status of one's
handicap in relationship to government policy.
Task Force On Concerns of Physically Disabled Women. Within Reach. New York, Human Sciences Press. 1978.
Covers implementing sexual and contraceptive guidelines of disabled women.
Task Force On Concerns of Physically Disabled Women. Towards Intimacy. New York, Human Science Press, 1978.
Tells feelings of physically disabled women concerning sexuality.
Wachter, Peter; Lorenc, John; and Lai, Edward. Access Chicago. Chicago, Rehabilitation Institute Of Chicago, 1976.
Features survey of architectural and construction considerations to help the physically handicapped lead
more productive lives.
Walzer, Mary Meister. A Travel Guide For The Disabled: Western Europe. New York, Van Nostrand Reinhold, 1982.
Designed for the disabled, guide is filled with tips for traveling in Western Europe.
Washam, Veronica. The One-Hander's Book. New York, John Day Co., 1973.
Demonstrates acquired techniques for individuals who don't have full use of an arm including social
occasions, eating, driving, dressing and taking care of baby.
Stop the War Against Women
THERE IS A WAR GOING ON...
• every day four women are killed by batterers in the US
• every 6 minutes, a rape is reported in this country; the FBI estimates that
only one out of ten rapes is actually reported
• one in four college women is a victim of rape or attempted rape while she
is in college, most by someone known to the victim
ACT TO STOP THE VIOLENCE!
For more information contact:
Fellowship of Reconciliation
Nyack, NY 10960
CHRONIQUE FEMINISTE N°39
FEMMES CONTRE LA GUERRE
Davantage que les hommes el malgre le meme bourrage de crine, la
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DE SEXOLOGIE S.S.U.B.
le 26 janvier 1991
20 ans de sexuality
Vingt ans apres .'^mergence du
neo-feminisme, qu'en est-il de la
problematique sexuelle de I'homme
et de la femme?
Lieu: Institut de Sociologie U.L.B.
Salle Duprgel - 44 avenue Jeanne
1050 Bruxelles - Belgique
Renselgnements et Inscription:
Secretariat du congres
Mme Colette Legrand-Delhaye
23/28 avenue Minerve
Tel: 02/344.62.87 ou 344.62.94
* Organis6 par la Societe des Sexologues Universitaires
de Belgique asbl.
National Women's History Project
7738 Bell Road Windsor, CA 95492
707-838-6000 Fax: 707-838-0478
For Further Information:
Contact Mary Ruthsdotter
AUGUST 26, WOMEN'S EQUALITY DAY SUPPLIES
After 72 years of ceaseless campaigning, women finally won the right to vote in 1920, on
August 26. The date is now commemorated as "Women's Equality Day." You can easily,
and inexpensively, call attention to this monumental accomplishment with displays or
programs using materials from the National Women's History Project. A spectacular, full-
color, 17" x 21" poster of Susan B. Anthony, renowned leader of the suffrage movement,
and a three-color, 18" x 24" poster collage of photographs from the events leading up to the
August 26 landmark are just two of their display choices. The videos, "How We Got the
Vote" and "Women in American Life, 1880-1920" are two program choices. These are all
available through their 48-page, multicultural Women's History Resources catalog. $1, from
NWHP, 7738 Bell Road, Windsor, CA 95492, or 707/838-6000.
SEND SUSAN B. ANTHONY BACK TO SCHOOL!
Hot-pink stickers and imprinted pencils, coloring books and colorful posters, books, games,
records and other marvelous materials featuring women from U.S. history can go back to
school with your children this fall. Like the Susan B. Anthony coin, much of women's
history has been forgotten, left out of most school curricula. As a parent, you can easily
introduce positive female role models like Anthony, Harriet Tubman or Maria Tallchief to
your children and their classmates through materials from the National Women's History
Project. Their 48-page catalog is packed with surprises for your kids and delights for their
teachers. For a copy, send $1 to NWHP, 7738 Bell Road, Windsor, CA 95492, or call 707/
GAIA NETWORK CREATIVE GROUPS FOR WIMMIN
Sandy Mishur, Coordinator, 708/597-2982, 14525 South Pulaski Rd., #22, Midlothian, IL 60445
Gaia Network is a resource development network for women. It focuses on earth centered groups for
growth, fun and health. The network offers women creative opportunities and shares information about
like minded networks. Gaia is a consultant to existing education and treatment programs. It facilitates
activities with your group and shares resources through lecture and demonstration on your site and/or in
local natural areas.
Program cells are custom designed to fit into your plans for treatment and education and thus can help to
relieve demands on staff and enrich existing services to your clients. All activities rely on a nature based
For further information contact Sandy Mischur at the above address.
RUNNING THROUGH AUGUST 3
Mother Wove the Morning
woman play written and performed I
"Why did I grow up feeling that my world was a Motherless house?"
Sixteen women throughout history answer that question, a
paleolithic woman, an Egyptian priestess, a biblical woman
who watched the rape of the Levite's concubine,
a Gnostic woman, a medieval witch, a
Shaker deaconess, and others. Their
dramatic stories show that the
human family has always
longed for its Mother
in Heaven, has often
exiled Her, and is
now inviting Her
to come home.
3133 North Halsted, Chicago, Illinois 60657
June 14th. 15th. 18th. 19th. 20th
Wednesday through Saturday
Beginning June 21. 1991
Tickets: $10. $15. $20
All Performances at 8:00 p.m.
ROM THE REVIEWS:
Take a train, take a plane,
ride a bus or a bike,
but go to 'Mother Wove the Morning'...
a magnificent, emotionally charged performance.
takes your breath away."
Men Tribune. AmoM
"Immensely satisfying and thought provoking...
skillfully executed " Sni un Tnbjjw, Uuh
What Carol Lynn Pearson has done is remarkable... an
enthralling piece." Hi»e Cnm. J
"Pearson. ...is surely the 17th woman
in her cast of truth-seekers"
MfchMt Hirttty, Chicago Tribw
We welcome your writing. Unsolicited manuscripts are usually reviewed within six months.
Please submit your work in double-spaced typescript and enclose a SASE. To submit on com-
puter disc, send a i x h " hard disc, using Word 4.0, compatible with a Mac II and include a printed
copy. Payment for accepted articles is in copies of the The Creative Woman.
Fall 1991 Crossing the Mainstream: Lesbian Perspectives (full)
Winter 1992 Women and War (Deadline November 1, 1991)
Spring/Summer 1992 The Changing Family (Deadline February 1991)
Fall 1992 Women in the Year Two Thousand: The Millennium (Deadline May 1992)
The Creative Woman publishes essays, fiction, poetry and graphic arts. Each issue is developed
around a specific theme, but may contain material unrelated to the theme. We celebrate the
creative achievements of women in many fields, from a feminist perspective.
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professional. So, it you stock onK one
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So much more than your average moon-chart, Hie 1 unar Calendar teaches the tree-alphabet a* inspired
by The White Goddess, by Robert Graves. The I 3 lunations oi the year are depicted as graceful spiral* in
this beautiful wall-hanging calendar.
In addition to the splendid graphics, poetry and prose h celebrated luminaries, The Lunar Calendar
provides comprehensive astronomical and astrological moon data, complete instructions, and an excellent
N.i.hn FW P.i»mnrc. EJitoi I .»vci h |c;in V.ill.m
$12.95 ISBN I K77920-0: »
LUNA PRESS Boston, Massachusetts, USA
An "Open Call" Competition To Publish
p< The Creative Woman
C-'VCclti^C Governors State University will fund the magazine
1 * through December 31, 1992, the date of the retirement
^A/Oll lcll I of Editor Helen Hughes. To continue the tradition of
making the invisible visible, displaying the accomplish-
ments of women in a variety of fields, we offer you the
opportunity to step into this transition point. This is a free, open, democratic competition, based
on the vision, ideas, enthusiasm of the applicant, not an "old boys" or "old girls" network setup.
This offering may be of interest to women's organizations and/or departments of Women's
Studies or Liberal Arts in institutions of higher learning. Individuals may also apply.
What You Get:
A fifteen year old magazine, The Creative Woman, ISSN #0736-4733
List of 600 current subscribers in alphabetical order
Mailing labels of current subscribers in zip code order
Bookstore standing orders (15)
Records and lists on computer disk, 5V4" IBM compatible
Hundreds of back issues, going back to 1978, and still in demand
Archival and correspondence records (two file drawers)
Planning materials for future issues, to use or not, as you see fit
The opportunity to publish an established magazine, and to shape her future according to
your own editorial policies.
What You Do:
Send us a letter of application, telling us your ideas, such as themes for special issues. How
would you like to see The Creative Woman develop or change?
For further information, including financial spreadsheets and the latest Annual Report, write to:
The Creative Woman
Governors State University
University Park, IL 60466
A committee of judges will be appointed by the Editor and the Provost of Governors State
University. The opinion of the judges will be final. The deadline for applications is December 31,
The date for transfer of ownership and copyright will be December 31, 1992.
AN OB/GYN CLINIC FOR
WOMEN WITH SPECIAL NEEDS
JUDY PANKO REIS
Sharing a paratransit ride with my friend
Veronica, the subject of pregnancy and gyneco-
logical visits came up. "I just don't know what to
do anymore. Bob and I think it's time to get some
medical advice on our chances to get pregnant, but
it's so difficult for me to go to the gynecologist
when Bob is not available to transfer me from my
wheelchair onto the examining table."
After giving her disability awareness training
session on speech disabilities, my colleague Joyce
confides to me about concerns regarding her lack
of birth control options. "Most of my friends who
are single like me, use the pill — but I have a
swallowing disorder that prevents me from using
oral contraceptives. I wish someone could find a
way for me to make the pill adaptable to my
A few months ago Grace was fuming as she
shared her mammogram experience with me.
"Can you believe it? The technician actually
pressed me to get up out of my wheelchair and
stand for just one minute!"
Like my friends, I share concerns about the psy-
chological and architectural barriers we as dis-
abled women encounter in our efforts to indepen-
dently meet our health care needs.
As a result, we along with others, are joining
doctors Suzan Rayner and Kristie Kirschner of the
Rehabilitation Institute of Chicago in designing a
clinic where the special health care needs of
women with disabilities will be addressed.
The clinic will offer comprehensive gynecological
care that includes obstetrical and high risk preg-
nancy services, family planning, mammogram
referrals, parenting support, peer counseling, and
psychological services involving sexuality and
body image. In addition, the clinic will also serve
as a forum where we can encourage the medical
community to research issues that we find espe-
cially important such as ways to safely reduce pre-
menstrual or menopausal stress in women with
head injuries, or ways to reduce the risk of
osteoporosis in women with arthritis.
For deaf women coming to the clinic, signers will
be available. For mobility impaired women, there
is an accessible examining table that allows inde-
pendent transfers from wheelchairs, as well as
independent access for the ambulatory disabled.
Among the benefits the clinic has to offer us, there
is a contagious enthusiasm over the prospect of
going into a medical facility where we are not
patronized or overlooked. Rather, the clinic will be
a place where we are treated with the compassion
and expertise of a multidisciplinary staff with
whom we are working in partnership.
It is our hope that in time our attitudes and prac-
tices will spread beyond the rehabilitation setting
to the general field of gynecology.
For further information on the clinic contact Dr.
Kristie Kirschner at 312/908-4744 or Dr. Suzan
Rayner at 312/980-7230.
-i »*„,, mn-t and communication
1 May 1991 service
Dear friends of Isis,
Our Isis International team in Manila joyously announces the opening of its office
and facilities at #85-A East Maya St., Philamlife Homes, Quezon City, Philippines.
We request your organization to mark the occasion by converging your
consciousness with ours as we we go through our, women's ritual of opening toward
the energizing of women's cause all over the world.
We realize our team's limitation in time and place and current capability to enable all
possible women and each existing women's or women supportive organization to
join us on this occasion. This limitation, however, does not stop us from reaching out
far and wide - east to west, south to north, east to east, south to south - to each
and all and from declaring our will and commitment to learn about and work for
women's empowerment across classes, races, ethnicities, and cultures.
We know we have much to do and relocating in Manila provides us with a diversity
of opportunities and dynamism for forward movement. We therefore look forward to
the vibrant internetworking of our existing relationships and the nurturant
development of new ones.
May we await your linking minds with us at Isis International in Manila? You can ring
or send us facsimile messages for queries, greetings, services, or proposals for
collaborative work. Or you can drop by and visit us any time. In any case, we will
love to hear from you.
Yours in women's solidarity and work,
la, Utaimm Awia- hwnwnh$\ Tuanim %om\ Warn Mm mamanvxam,, uhw', Ana IHahia, Iwrwrvp-', a Jtuda, (Pama, Jim&n,
- Board of Trustees
la, wwwi, Abaa-hojwnwm, Jjvmh, AnMan, (jomm AwHu, CwJu, wwduuam,, wd CculaaaaA, jwMk CaJuma, turn
Ctslolwva, (EaMKiAa, bowMiaA, ulanim Xa/X, Cwamh Im^-lUaMimm, Awmia, Jam,, a Lma, (ravia, Jimtyn, - ISJS
International Manila Team
Isis International — 85-A East Maya St., Philamlife Homes, Quezon City, PHILIPPINES
Tel. No. (632) 993292 Fax. No. (632) 997512
Thinking About Disability
If you have read this far, you have learned some-
thing about the inner life and outer challenges
faced by persons with serious physical limitations.
Have you gotten past the fear and avoidance that
so many people experience in the presence of
disability? Why is it that the sight of disability is
so troubling to the "non-disabled"? Sheer terror,
that's what. Knowledge that "there but the grace of
God go I." Any of us, at any moment can be
suddenly changed, from a graceful high-diver in
the perfect curving moment, a breathlessly racing
downhill skier, a dashing motorcyclist, a sleeping
camper — to a coma, a wheelchair, months or
years of rehabilitation, a life script and landscape
forever changed. Does the thought scare you?
Make you nervous? Welcome to the human
condition, where the central fact is uncertainty! In
attending to our sisters whose stories are here in
this issues, we can feel gratitude, for they have
assured us that such blows need not be the end of
the world, for they have shown us how they came
Did you notice the quotes around "non-disabled"
in the paragraph above? Who indeed are they? A
few more questions to ponder: Who is blind? (the
person who cannot see the growing numbers of
homeless women and children? the person who
cannot see someone with a cane, walker, or wheel-
chair, vainly signaling for a taxi?) Who is deaf?
(the person who cannot hear the cries in the night
of an abused woman or child in the house or
apartment next door?) Who is crippled? (the
person so hampered and limited by prejudice and
bigotry that another human being is not greeted as
» fully human?) Who is brain damaged? (the person
who is so lacking in imagination that the first step
in moral consciousness — the awareness that
others live in the exact center of a universe, just
like you! — has yet to be taken?) I hope the stories
in this issue will bring you a gift, a link to another
reality, and therefore an expansion of your and
TCW Goes to the Movies
On reading the film critics' reviews of films we've
seen, we often ask "Did we see the same movie?"
Did we draw a different meaning?, or Did we see
something others missed? If TCW readers have a
similar experience, will someone please come
forward to write feminist film review for this
magazine? Here are a few cases in point.
The story and cast of "Pretty Woman" is set up to
prepare us for the Cinderella ending; Prince
Charming, rich and handsome, even comes mythi-
cally on his white charger to rescue the poor
wayward street urchin. But she is the one who
rescues him\ She is the one with integrity, who
saves him from his greedy, exploitative, non-
productive life by comparing his buy-out/take-
over schemes to a "chop shop", a racket that steals
cars to dismantle them for their spare parts. And
in case anyone misses the point, at the film's end,
when he asks her, "After Prince Charming come to
rescue her, what happens next?" and she replies,
"She rescues him right back," this satisfying twist
make s "Pretty Woman" a feminist as well as an
entertaining movie. Cinderella rescues Prince
An Act of Cultural Restoration
In her scathing, personally vicious New Yorker
review, the reviewer commits the major fallacy of
criticism: to disparage a work from an antagonistic
point of view, criticizing it for something it did not
intend to do, That was not a "pet wolf," Pauline!
In "Dances With Wolves," the wolf is a messen-
ger/guide from the spirit world, in keeping with
the religion of the Native American for whom all
manifestations of creation are enlivened and
inspirited. Quite apart from any aesthetic consid-
erations, this film is an act of cultural restoration,
restoring dignity and identity to a people whose
culture has been brutally ripped from them,
whose images of themselves have been degraded
stereotypes, or (even if sympathetic) played by Sal
Mineo or Jeff Chandler. Oglala Sioux go to see
"Dances With Wolves" over and over again,
reveling in the sound of their Lakota language,
spoken beautifully and accurately by Native
Olgala Sioux actors: the first film to have their
speech accompanied by English sub-titles. To take
issue with it based on a prejudice against "New
Age" ideas is to miss the point; Uncle Tom 's Cabin
was not the greatest American literary work, but it
raised the consciousness of a nation. The Ameri-
can mind at this moment in history is in desperate
need of learning, and being reminded of, the
teachings and wisdom of native peoples: ecologi-
cal awareness, closeness to nature, reverence,
decision by consensus, harmony and balance.
When seen in this light "Dances" makes a ground-
breaking contribution to this task and thus to our
Freedom found outside the law.
Gide, Twain and Mailer, among other male writ-
ers, have proclaimed the peculiar kind of exhila-
rating freedom that comes suddenly to the crimi-
nal on the run; at a certain point, the law- breaker
realizes that there is nothing to lose, that all norms
and conventions have been breached, and that
therefore one is totally unbound, and that any-
thing is possible and anything is permitted.
American movies have long enjoyed playing with
this idea, in the gangster film, the "buddy" film,
the "road" film, most memorably epitomized in
"Butch Cassidy and the Sundance Kid." Women
have been excluded from this genre until "Thelma
and Louise," a movie that makes women smile
with recognition, wince in memory, laugh in envy;
and makes some men sweat in nervousness.
Women outside the law?! good women? a smart,
kind waitress and a suppressed, chaste little
housewife? attractive, likeable women, talking
back, shooting back, hitting the road (to
Mexico... where else?) and discovering total,
glorious freedom for the first time in their lives.
And the ending (out of four or so possible sce-
narios) is the only one that fits and feels right to
this enthralled watcher of the screen.
Go and treat yourself to three hours in a trance
state inside the mind and soul of Janet Frame,
New Zealand writer and poet whose autobiogra-
phy is playing as "Angel at My Table." Unlike the
Hollywood technique, which hits you over the
head, this woman-written, woman-directed,
woman-produced masterpiece is subtle and
indirect. We live an extraordinary life from within
her consciousness, the camera lingering over all
objects and vistas which capture Frame's attention,
without voice-over narrative: none is needed.
With a growing identification, we respond, with
her in an almost literary way, from her infancy
and early childhood through the traumas of
poverty, school days, college, misdiagnosis and
shock treatment, travels, a summer of love, to her
realization of her gifts as a writer. Typical of an
extraordinarily gifted child, Janet does not under-
stand what it is about herself that makes her so
different from others, and feels alienated, lonely,
always outside and isolated. But she lets us in once
or twice, for a glimpse of her creative process. Like
many, she writes to comfort herself, as she says,
for catharsis; she also creates as the truest expres-
sion of her deepest self, in concentrated joy, often
inspired by the melodies of classical music or the
beat of rock. This exquisite film will haunt you for
days to come. In the final scene, Frame is sitting in
her tiny tear-drop trailer, which is ablaze in the
night as a metaphor for her luminous spirit,
leaning over her typewriter, stuck; suddenly she
dashes outdoors and leaps to the beat of the dance
music coming from somewhere, dashes back
inside, and types again, murmuring
"hush.. .hush.. .hush..." and we leave the theatre
knowing that all is well, and all will be well, and
all manner of things will be well.
ORDER FORM FOR BACK ISSUES
The following are available for $5 each:
Vol. 1, No. 4 Women in Science
Vol. 2, No. 4 Feminist Criticism
Vol. 3, No. 2 Year of the Child
Vol. 3, No. 3 Women Sailing
Vol. 4, No. 1 Energy in Living Systems
Vol. 4, No. 2 The Coming of Age
Vol. 4, No. 4 Women in the Wilderness
Vol. 5, No. 2 Third World Women
Vol. 6, No. 2 Women in Law
Vol. 6, No. 3 Men Changing
Vol. 6, No. 4 The Goddess
Vol. 7, No. 1 Poetry
Vol. 7, No. 2 Performing Arts
Vol. 7, No. 4 Women of China
Vol. 8, No. 1 Women as Healers
Vol. 8, No. 2 Belles Lettres
Vol. 8, No. 3 American Indian Women
Vol. 8, No. 4 New Voices (Susan Griffin)
Vol. 9, No. 1 Pentimento (Barbara Wallston)
Vol. 9, No. 2 Women of Israel: Jewish and
Vol. 9, No. 3 Women in Management
Vol. 9, No. 4 Photography
Vol.10, No. 1 Toward Planethood
Vol.10, No. 2 Soviet Women
Vol.10, No. 3 GAIA: The Living Planet
Vol.10, No. 4 Life Stories
Vol.11, No. 1 Men and Birth
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